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Shared decision making

What information needs to be shared?

In order to successfully share the decision making process, doctors and patients must work together to share information with each other. Using their knowledge, experience and expertise, doctors should explain the options that are open to patients, including the advantages, disadvantages and uncertainties about each of these. In turn, patients need to make doctors aware of their preferences and expectations. There are a number of resources available to support the process of information exchange, such as decision aids online, cates plots or options grids. These are designed to show the pros and cons (or benefits and risks) of different choices. Using such tools can improve patients understanding of risk and their engagement in decision making.

However, there are many ways to share decisions without formally using pre-set tools. The three question campaign captures this process, suggesting considering the following three questions –

1.    What are my options?
2.    What are the benefits and possible risks?
3.    How likely are these risks and benefits? 

Whatever method is used for information sharing, it is important to be sure that both parties have access to, and have understood, all the information they need, in order to work together to make a meaningfully shared decision.

Sometimes, Such as just after being diagnosed with a serious illness, patients may not be in a position to make decisions straight away. They may want to find more information for themselves (for example by looking on the internet), and may need some time to digest and think about what they have discovered and been told, and how it might affect their daily lives.
 

She found it helpful to use a decision aid that allowed her to revisit information and think about her preferences outside the hospital environment.

She found it helpful to use a decision aid that allowed her to revisit information and think about her preferences outside the hospital environment.

Age at interview: 33
Sex: Female
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Probably, actually, probably about eighty-five percent of the decision was based on actually having a chance to think about the information out of the' a hospital setting, a home setting.

So is that another important factor about it, the fact that it was here and not in somewhere in hospital?

Well, I think that when you're somewhere clinical' you know, sometimes, I, I felt confident to say I couldn't, I hadn't made a decision. I didn't feel under any sort of pressure that I had to have made a decision there and then but it gave me a chance to go away and sort of think about it again with information at my fingertips. Whereas if I'd just gone away, I would have just gone away with the sort of verbal conversation that we had, kind of thing, which was, you know, as weeks go by, you don't retain the information or you're not really sure exactly what's been, been said to you, so I thought that was quite useful.
 

Sometimes information can be given too soon after a life changing injury. Melanie feels there isn't enough information about infections and different types of catheters.

Sometimes information can be given too soon after a life changing injury. Melanie feels there isn't enough information about infections and different types of catheters.

Age at interview: 55
Sex: Female
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Sometimes I think you get the information too soon. It’s because, certainly again in terms of my injury which is a very long term thing, and it takes you a while to realise just quite how grave it is. 

You get given a whole bundle of notes and information and it’s as if it relates to somebody else, not you. You don’t really take it in. I sometimes think that maybe it could come a little bit later in the process or maybe it could be repeated later in the process. 

I also think there isn’t nearly enough information given about the downside and the possibility of infection. I mean in all the literature I read on, I was given and I read on catheters, drainage, urine drainage, there is absolutely no, nobody’s telling me “Yes but you’ll probably get infections all the time.”

It’s not something that is, obviously the health service don’t want to talk about it. But it’s, I think people cop out a bit. I think there is an awful lot of turning a blind eye to it. Especially when you hear about the amount of resources that are devoted to treating knock on infection rates from bladders. So there’s a lack of forthrightness I think on the part of the information put out about different kinds of catheters, success-rates.
 

Immediately after having a biopsy to see if he had prostate cancer the consultant said he would...

Immediately after having a biopsy to see if he had prostate cancer the consultant said he would...

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, 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. 
 
What information patients need from health professionals

For patients, getting honest and accurate information from health professionals is important because it can affect the choices they make. For example, a young man who is now HIV positive felt that he was not given accurate information about safe sex either in sex education at school or by his doctor. Talking about discussions he had with medical professionals he said: “Because you're at such a young age sometimes they want to protect you; they don't want to just give you the information.” Getting the truth about a diagnosis is also important for allowing people to access the help and support they need. It is equally important that people have the information they need when choosing which tests to have.
 

The doctor's honesty when diagnosing his wife with Alzheimer's means that they were able to...

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The doctor's honesty when diagnosing his wife with Alzheimer's means that they were able to...

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 What I observed while we were waiting to be seen was, people going in and out, husbands, wives, family members going in individually, obviously to be, to discuss things with, the professionals. And I imagined quite incorrectly that what was happening was that they were being given information or a diagnosis separately from the, from the patients, but that turned out to be incorrect.

 
But I suppose the, second, reason was I suppose I thought again incorrectly perhaps that consultants would be reluctant to, give a completely honest diagnosis when you're dealing with an illness which is, which is pretty distressing to contemplate, where there is no apparent, treatment or cure for it. And the long term prognosis is a pretty grim one and I just felt that maybe they wouldn't want to do that quite directly and openly, but that didn't prove to be the case.
 
And then when we eventually went in it, was, to see the consultant, it was just the fact that without any preliminaries, he simply came straight out with the diagnosis, not wrapping it up in any way at all, and causing us both, quite naturally, considerable distress. I understand now I think why he was doing that, but it was quite a shock at the time.
 
Yes. Why do you think...?
 
Oh, I think that, if you're less than honest, if the patient is not made aware of the nature of their illness then it simply cuts you off from a great deal of the, support and advice that you can get. I mean not least, it makes the future dialogue between the consultant and you and the patient, a less than honest, and therefore a less than helpful, dialogue.
 
And I just think that as far as we're concerned, everything that has flowed from that moment in terms of, medical treatment support for both myself and [my wife], has stemmed from the honesty and the directness of that first diagnosis. So I'm, now absolutely convinced that in almost any case that I can think of you really should be as honest as you can. And then you come to terms with that, and I believe most people will find a way to come to terms with it, and then you can kind of move forward in terms of, leading your life as naturally as you, as you can.
 
 

The written information was better in her current pregnancy than her first and the midwife discussed it carefully with her.

The written information was better in her current pregnancy than her first and the midwife discussed it carefully with her.

Age at interview: 43
Sex: Female
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Yes, I mean I think, when I went for the scans this time, when I was pregnant this time, the information that we got sent before the scan actually was very good at telling you that. It said, you know, 'This is a serious, it's a serious medical proce-' - you know, not in those kind of words, but it was a serious medical procedure, that it wasn't there just for, there was a lot of things that could be found out and it wasn't always good news.  

And that was in the information that we were sent. And it was really good that that was included in the information. And it said things like, 'If you have other children it may be a good idea to have somebody else looking after, don't bring your children with you because it could be that you get bad news and do you want your children there?' 

And I felt that that was very positive that they dealt with it like that. I thought it was really helpful, really helpful information, very clear and actually my experience of finding I was pregnant that time and, and the first time was poles apart in terms of the kind of level of support and information I got.

So you had a session with the midwife?

So I had a session with the midwife. Now that might been because I'd had the early scan, so I knew at eight weeks that the baby was OK at that stage, but I saw the midwife immediately after I'd had that first, very early scan and she was...

Was that their, that was their invitation?

No, I made an appointment to go to the, to our GP and I saw the midwife then, and she was brilliant and just spent absolutely ages with me, going through a whole pack of information about all of the different options that, all of the different tests that would happen, what the processes were, getting information about me and medical history. 

It was much more what I thought my experience was going to be the first time. So it included information about where you could get the nuchal fold scan in that information.
The level of information that patients want or need to make choices may differ because of their illness or how much responsibility they want to take. A woman who knew she had a terminal illness said that she was a great believer in asking the ‘same questions of different people’ because you get different opinions and perspectives and while ‘a lot of it is scientifically proven’ some is ‘this worked for me’. 

The patients we spoke to said there were some specific issues about their treatment that they needed their doctors to explain to them. These included the reasons for having the treatment and also explanations as to why it had to be treated in this way. They also suggested that information should be tailored to their condition and circumstances.
 

Eileen was extremely worried about having lymph nodes removed and wondered why it was necessary...

Eileen was extremely worried about having lymph nodes removed and wondered why it was necessary...

Age at interview: 62
Sex: Female
Age at diagnosis: 60
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 At some point, I can't recall exactly when, in this frantic time, it may have been after I had the second opinion, I then wrote to my surgeon and faxed him the letter with some more questions that I had. By then it was why he was proposing to take lymph nodes away when DCIS was all about non-invasive cancer. There might be invasive cancer but they would find that out after I'd had the surgery and wouldn't it be better to just remove the tissue and only attack my lymph nodes if they discovered there was invasive cancer after I'd had my mastectomy. And so these were the kind of questions I had. So I faxed him this letter and I put on the top my email address. I didn't actually say I'd like to do this by email, but I thought at least I'll show I've got an email address, and he faxed me back the same day a reply, a good reply to my letter and actually said, "If you would like to communicate with me by email I'm very happy to do so", which was a thrill, an absolute thrill.

 
And from then on my relationship with my surgeon and all these problems about information went into a different gear. We weren't over all the problems, but I had numerous exchanges with the surgeon, and he was so quick at responding. He would look at his emails between surgery operations as far as I could see. And he was extremely good, and bit by bit I got through some of my questions. But it was not without its trauma, because a week before the surgery I still had some important questions, which I never got to the bottom of, about the lymph nodes, and that was what - I was far more terrified about the surgery on my lymph nodes than I was about losing my breast. And that was because, although I didn't want to lose my breast, it wasn't going to interfere with the rest of my body. Taking away lymph nodes was actually going to interfere significantly with my immune system, and I'd read all these dreadful things about the possibility of lymphoedema, and what's the point of doing this if it's not actually essential?
 
 

The doctor did not consider Annette’s individual needs. He gave her a leaflet about the menopause...

The doctor did not consider Annette’s individual needs. He gave her a leaflet about the menopause...

Age at interview: 46
Sex: Female
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 Alright. As I say the menopause hasn’t been easy. I haven’t had what you call HRT but I know there’s lots of things out there you can take and in your body. I think I’m quite a stubborn person in that way. I’m not, as I say, I don’t drink, I don’t smoke, I don’t take anything into my body unless I really know a lot about it. When I did go to the doctor I didn’t find him very helpful, it was like, “Well there’s HRT or you get on with it more or less.” So I just thought, “At the moment I’ll get on with it.” 

See I don’t know much about that because when I went to the doctor it was either, “Take that,” or, that’s how I felt, or “Get on with it,” so I took the option of getting on with it.
 
When you went to the doctor did he explain about what HRT was? 
 
He gave me a leaflet which they all do, but I’m slightly dyslexic anyway, so of course somebody just shoving a leaflet on me.
 
It doesn’t work.
 
It’s not as if I can just read it, I have to have somebody to read it, or I’ll read it and think that didn’t make sense to me. So I’d have to have somebody else.
 
So do you know what it’s for? Do you know what it does?
 
Not really no.
 

 

People were often keen to receive information about the potential side effects of treatments and how they might impact on their quality of life. This was true when people were making decisions about taking medications, or having a procedure, such as catheter insertion. 
 

Oliver has learnt to trust his own instincts and to demand from the doctors all the information...

Oliver has learnt to trust his own instincts and to demand from the doctors all the information...

Age at interview: 23
Sex: Male
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And so it’s learning to trust my own instincts about who I am and how I’m gonna respond to things, that’s really important. And if a doctor tells me something and I disagree with it, trusting myself to disagree. And ideally if I do disagree to ask them about it, and to have a doctor that can say, “Well this is why I think you should do this.” And to treat me like an equal partner in, or an equal player in the endeavour of making my life better.

And that’s one thing that I sometimes haven’t gotten from doctors and usually when I do then I [laughs], I stop, or I don’t do any of the things that they’ve suggested, I might still see them but like, it’s just like, “Okay well, if you aren’t gonna give me the info I’m not gonna put whatever this chemical is in my body, ‘cos I don’t know what it’s going to do to me, and you haven’t proven to me that it’s going to actually make things any better.” And I know that some medication can make things worse.
 

She thinks parents should be given “objective information” about the “pros and cons” associated...

She thinks parents should be given “objective information” about the “pros and cons” associated...

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 Yes, I think objective information, I would like to see there, really objective information, not coloured in any sense, really giving both advantages and disadvantages. Statistics, as much as information is possible, statistics, both sides of information, pros and cons, really pros and cons about the MMR. But really, really objective. That, that, that I really would like to see. That, that's the only thing in my opinion that really helps parents. Anything else is unfair I think, because anything else is just scaremongering, one way or the other. Because at the end of the day, the day it's both scaremongering. You know, people say, “No, don't do the MMR, you don't need MMR, you don't need any vaccination because vaccination is this and that”. It, it's scaremongering. And there's so much information out there that's not true.

 

Stuart says he was given 'grossly inadequate' information. He thinks patients should be shown a catheter before one is inserted and told how it stays in place.

Stuart says he was given 'grossly inadequate' information. He thinks patients should be shown a catheter before one is inserted and told how it stays in place.

Age at interview: 61
Sex: Male
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Certainly in my case, and I think it most likely would be true for many others, if it’s through an accident or something of that sort anyway, you go from knowing nothing whatsoever about catheters, to suddenly having one implanted. And the amount of information that you are given is grossly inadequate. I can only remember the most rudimentary things being passed onto me. And it was rather, “You don’t need to worry about that, the nurses will do all that you need.” And, unless you take a personal interest and ask a lot of questions, you don’t get told. You’re just “done to” rather than become a part and a controlling interest in what is being done to you.
 

I believe it’s something like 37 years since the Foley Catheter was invented. The first thing is I think that every patient should be shown before the catheter is inserted in them what actually happens. Because you’re told there’s a balloon. You’re not told whether this is a balloon on the end of a sort of string that floats around inside your bladder like a party balloon or what. It’s not explained that it’s like a lifebelt, tightly round the catheter itself and how it’s inflated. All of these things, because it’s inside you and you don’t see it, I daresay most people haven’t seen a catheter with the balloon blown up. I think you ought to be shown so that you know how it stays in, why it stays in. How much of the tip of the catheter is there, if you pull on it, what you’re pulling against, and similarly that the tip of the catheter, if that’s rubbing against your bladder wall consistently, the irritation that that’s going to cause. All of that I think should be explained in the early stages, when you’re first fitted with it, or in a brochure that you’re discharged with.  

Information about illnesses and test results should be given to patients in a timely fashion. Receiving them promptly can provide much needed reassurance in stressful times, and having to wait a long time before getting test results can be upsetting. A woman diagnosed with precancerous cells in her breast had at least two appointments cancelled by her consultant. He apologised saying he was ‘embarrassed’ and explained that they were unable to find what they were looking for in her test results. She eventually found out that there was no evidence of precancerous cells in the breast that had been removed.
 

He phoned the consultant’s secretary everyday trying to get his results of the test for prostate...

He phoned the consultant’s secretary everyday trying to get his results of the test for prostate...

Age at interview: 61
Sex: Male
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 These were more PSA tests, they in fact took about a month to come through and each day I was phoning the consultant's secretary, first of all getting to the hospital switchboard "Could I speak to the consultant's secretary," she might have been out and then each time she would have to shuffle through a set of papers to see whether my results were in. Each time it seemed to me like waiting for an order of execution of death and this went on day in day out and feeling this terrible feeling of apprehension, cold sweaty hands, 'am I going to live, am I going to die' kind of feeling.

 
If PSA is brought up in the course of a medical interview when people are really thinking about other things, they are not going to take it on board. I mean I don't think at the end of the interview I could have gone out saying PSA stands for Prostate Specific Antigen. I didn't think of it as a test for prostate cancer. I'm sure he said something at that time but I don't think I gave informed consent if you like.
 
And there seems to be a sort of general assumption that for all men the objective will be to live as long as possible and I don't happen to agree with that view point at all. It may be appropriate for many men, particularly family men, with growing grandchildren and so on, they want to see their grand-daughter getting married or their great grandson getting baptised, whatever. But for other people it will be the quality of life and the quality of life means being, or at least feeling, healthy that's the more important thing. And I would have liked very much to discuss these kind of issues with a counsellor, possibly trained by the consultant himself or herself.
 
I wish I had never had the very first PSA test. But it was my own fault, I can't blame the urologist in Washington, I could have asked for more information or thought about the consequences, it just did not occur to me, it did not seem to be a major thing at the time. It wasn't presented as a major choice to me and I didn't think through it. 
 
 

She was pleased that her doctors keep her informed quickly about her test results and treatment...

She was pleased that her doctors keep her informed quickly about her test results and treatment...

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.
 
Information that patients find for themselves

These days, patients have often already looked up their symptoms on the internet before they go to see their doctor. The internet is a first port of call for many people, and its use must be recognised in understanding the way in which patients seek information about their health. In fact, people often see it as their most accessible and convenient source of information. Using the internet is sometimes offered by health professionals as part of the decision making process.
 

‘I really valued feeling cared for and that someone took an interest me more than anything else’

‘I really valued feeling cared for and that someone took an interest me more than anything else’

Age at interview: 50
Sex: Male
Age at diagnosis: 49
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Because I had a good experience with the doctors; I think that they levelled with me. They......being told I was depressed, you know, clearly being told that was the case and all these other things that were going through my mind were a symptom and not a cause felt good to me. I think the doctors spent time with me I never felt rushed at all and we talked about me and my emotions and how I felt and I really valued that. I really valued feeling cared for and someone took an interest in me more than anything else. And I think I may not have taken the tablets if I’d come out of there thinking ‘Oh it’s just another patient to be given drugs to shut up,’ or whatever.
 
The doctor who prescribed the treatment said think about it, you’re not under pressure but from where he was sitting he thought it would be a good idea, but he didn’t want me to do it unless I thought that it would help me. And yes I just felt looked after, I felt that they took an interest in me and I felt if it all went pear shaped they would be there to help me out.
 
You felt well supported.
 
And if it went well - fantastic. So I had a really good experience from the general practice I should say.
 

He used the internet to find out information about heart failure. He finds it reassuring because...

He used the internet to find out information about heart failure. He finds it reassuring because...

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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 But I think a lot of men are getting more conscious now aren't they, because with the internet and everything, it's there for you to find, the information is there for you to find, so therefore you're only an idiot now if you don't want to look for it. Because that means you're really walking around with blinkers all the time, you know what I mean. Because it's there for you to find, you know so.

 
Well, that's a good link to my next question, which is how have you found out more information? Have you used the Internet?
 
Yes, because it's there, it's on, it's there 24 hours a day and provided you've got access to it then why not use it, you know what I mean? Because nobody's perfect, nobody knows everything, right, and no disrespect to anybody but you know, not even the doctors know everything. And the best way to find out anything in life is through personal experience. 
 
I think that's how we did it, actually, because my niece was with me, we did get some answers because I'm trying to get into this heart thing, you know what I mean? Because I had the and it brought up the diagram of the heart on there and I said, 'I've got that at home on one of them pamphlets,' and I says, 'Oh yes, there it is there,' and then she was saying, 'Well, what's wrong with you?' And I went, 'See that one there, it's blocked, it's narrowed, and you see that there it's pumping too fast, the valve,' and she said, 'Oh...' and then she got an insight into it as well so, you know what I mean? It was nice, it got us a bit closer actually, but then she started to worry, 'Oh, you're not going to be here much longer are you?' and I went, 'No, don't start!'. But you know at least she could see for herself what I was going through, you know what I mean. So if I was walking up the stairs at my sister's now and I felt a bit out of breath, they could understand. He says 'Oh, it's the old ticker, isn't it?' 'Yes,' and we started to make a joke about it and you know that's the way you get light-hearted man, and you know you've got to be! You can't take it too seriously, you know you'd be in a coffin already, man, I'm telling you!  
 
 

Reasons the internet to be one of the best places to gain information.

Reasons the internet to be one of the best places to gain information.

Age at interview: 59
Sex: Male
Age at diagnosis: 52
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There's a series of pamphlets which were useful in the beginning. The Heart Association pamphlets they produce - I think there are over a dozen of them - little booklets. I have those upstairs and I read each and every one of them about twice, they have all sorts of diagrams and they talk about other things like diet. They explain various procedures and they talk about medicines but not in as detailed a way as I thought I wanted to be informed. 

There are American websites which give you a lot of information and I've been able to get diagrams of the heart. For example I had to undergo anangiography and I got full explanations. The doctors here were very, very good- I got diagrams from them and they drew pictures and so on,but I got a lot of things from the Internet and articles about angiography and also abstracts and full accounts of medications.
As well as finding out facts and figures about the health issue people also learn how others have dealt with the condition – if they are lucky this might be in a face to face local support group or they may choose to use internet support.
 

She felt that the doctors saw her as a ‘heart-sink’ patient but got involved with a support group...

She felt that the doctors saw her as a ‘heart-sink’ patient but got involved with a support group...

Age at interview: 56
Sex: Female
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 So basically we were thrown back onto our own resources without any real medical support and by this time I had a frighteningly thick medical file and I could see the doctors sought of quailing as I approached.

 
I was sort of the classic heart sink patient unfortunately, and this went on for a number of years but the only good thing that happened was I began to try to find out for myself what had gone so horribly wrong and why I was still in pain. Now this was well before the internet and it was quite difficult to get access to medical journals and the sort of information I wanted.
 
But I was very fortunate because a local self help group for people in chronic pain was set up locally by a nurse who had actually also damaged her back very badly lifting a corpse while she was on duty and she had not been able to get any help either and had ended up going to the [name of hospital] which at that stage, had I think, had the one and only chronic pain management programme in the country. It was sort of imported from America and she had found it so helpful that when she came home her home near me, she decided to set up a self help group to try and pass on the sort of strategies that she had been taught.
 
So I got involved with that and it was such a huge relief to find other people with chronic pain problems, we all had different stories and we all had different conditions, although the majority were back or neck related problems but other people with facial pain, or phantom limb pain or arthritis pain from MS, all those sort of things and we formed a very supportive group which I found enormously helpful because at last I could talk to people who understood where I was coming from.
 
 

When she was deciding whether to have surgery for her chronic back pain she used the internet and...

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When she was deciding whether to have surgery for her chronic back pain she used the internet and...

Age at interview: 42
Sex: Female
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 There are things like I think Back Pain Association and now, with the age of the internet, there's so many things that you can find. So find out as much as you can about your pain and why it's there and, through understanding, might come acceptance that whilst it's there but you understand why and, therefore, you may be in a better position to deal with it.

 
Is the internet something that you've used yourself?
 
Oh yes, but then I have access to it very easily. I use the internet a lot. I've got a computer at work. I actually found my operation on the internet. I got more information from the internet than I did from my GP, from my surgeon. 
 
I mean I knew exactly the procedure I was going in for, I knew why they were doing what they were doing and, when I didn't have the expected result after surgery, I was in fact able to go onto the internet and find out why that might be the case. And then, when I went to the doctors, went back to the hospital, I was able to ask quite probing questions.
 
But sadly I think the more you ask the more you realise that there isn't always an answer and that can be quite difficult because you think, in this day and age of technology, that there will be an answer, there must be an answer, but there isn't always and that's difficult. 
 
So yeah, I find the internet incredibly, incredibly helpful. I think for people who perhaps don't have background in biology or, you know, they don't understand, they've not been trained in these areas, there's a lot of help on the internet in very plain language that people would understand and it is an eye opener. 
 
And I think when you're informed and you go to speak, especially for example if you're trying to determine whether you should go for surgery or not, the more informed you are, the more you can ask of your surgeon and the more, I think perhaps you will feel easier with any decision that you make because it's an informed choice.
 
So I find the internet very helpful and I think anyone can go on the internet and find it helpful and that might even be something that, I know for example when I asked my GP he gave me a disc, a CD away with me and basically that was a list of all they, you know, support groups that were available. 
 
So yeah, I think it would be good to have access. I think you'll probably get a lot more information from that than you will from a five minute chat with your GP and even a 20 minute consultation with your surgeon or your consultant and I think you can ask more questions and get more answers if you do.
 
 

Malcolm recommends support groups because they can help people feel they are not alone.

Malcolm recommends support groups because they can help people feel they are not alone.

Age at interview: 54
Sex: Male
Age at diagnosis: 39
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And you're obviously very active in the diabetes support. Can you talk in some detail about your experience of being part of a support group?

Yes, well, it started off, there again it was the practice nurse that said, “Oh, what you ought to do, there's Diabetes UK, and you can subscribe to the Balance magazine and join Diabetes UK.” Which I did. I got the magazines and found it quite interesting. And in the magazine it said about local support groups. And I thought, “Well, interesting, I'll go along and see what it's all about.” Went for a couple of years and very interesting. They asked me if I'd like to be on the committee. So I thought, “Yes, that can't do any harm.” So ended up on the committee. Then the chairman retired and they said, “Would you like to become vice-chairman?” And I said, “Well, yes, that'll be all right.” And looked at the chairman, who was then, who, the vice-chairman then became chairman. And unfortunately about six months later he died. So I ended up chairman. Which is not what I wanted at all, but I suppose I do enjoy it.

We organise six events a year, three south of Bristol, three north of Bristol, to try and encourage people to come along. It's not like Alcoholics Anonymous, not that I've ever been to Alcoholics Anonymous, where you've got to stand up and say, “I'm a diabetic.” But most people there are diabetics or carers of dia-, people with diabetes or people who work in care homes and doctors and nurses. They all come along because we get quite prominent people to do talks. And then it's question and answer. So it's very low key, very friendly. It's free. And we just encourage people to come along.

But what, if, if you imagine somebody asking you the question, “What, what would somebody get from a support group?”

Sharing experiences, realising that you're not on your own. Either the chance to talk to a consultant, a professor of diabetes, which you wouldn't normally do, but more importantly, to talk with other people on, either on just a one-to-one basis or in a little group. And I'm sure the problems that those, you know, one person has got, everybody's got, you know. So it's just a feeling that you're not on your own. You don't have to go. You can go to some meetings, you can go to other meetings. It's just to, to help with support and awareness, and to meet other people with diabetes that have got all the problems you've got. So you, you think, you know, “I'm not alone here.”
People often choose to find out as much information as they can and return to see their doctor having researched their options. For example, when antenatal screening uncovered that her baby had a heart condition, a woman immediately turned to the internet for information. She was grateful to have this as an option saying that if her parents had been in a similar position thirty years ago, they would have had to ‘rely on the doctors’.

If the doctor encourages patients to use the internet for health information the patient may be pleased to discuss what they have found. Advice from the doctor can help people to work out whether what they have found is applicable in their case.
 

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.
 
In the early days doctors were perhaps worried that patients would arrive at the consultation with unmanageable ‘sheaves of printouts’ from the internet, and some still try to discourage patients from looking for information on-line. But most doctors now recognise that searching online is routine and often a sign that a patient is engaged and interested in their health.
 

Found out about a new treatment at an AIDS conference in America and had a ‘dynamic’ discussion...

Found out about a new treatment at an AIDS conference in America and had a ‘dynamic’ discussion...

Age at interview: 45
Sex: Male
Age at diagnosis: 40
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I looked at the role of, you know the thiamine derivative drugs, you know the, like the AZT, DDI. And I noted that most of them they, they are the ones causing you know, mitochondria DNA toxicity, and to some extent, lipodystrophy. That was my understanding. And of course one of my drugs was that one. 
 
And in February this year there was, you know the Aids Conference in Boston, and there was one paper which presented to there where was a treatment whereby you can use two drugs minus the thiamine derivative. So when I went in for my appointment with my doctor I said, 'Well look can't we try this?' So it was quite a, a very sort of dynamic discussion, yeah. 
 
So he said, 'OK we can try it.' Because what we have seen from this paper they presented is that you can actually be on this one and actually the… the effect of long term in terms of lipodystrophy isn't that bad. Although it cannot be completely be reversed. But I think it is the effect isn't that bad for long term. 
 
So that was sort of looking at, you know the length of time I'll be on the treatment. I said, 'Well that sounds fair.' You know sensible to go for that. Then the, secondly I think the only downside to that combination, two combination, was that I think you ran the risk of having a high cholesterol level. But obviously I said, 'Well I mean it's something I can monitor by what I eat.' So we somehow, between myself and my consultant we agreed.
 
 

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.”
 
 

Ruth was shocked at her GP’s apparent indifference to the news of her Parkinson’s disease. She...

Ruth was shocked at her GP’s apparent indifference to the news of her Parkinson’s disease. She...

Age at interview: 56
Sex: Female
Age at diagnosis: 47
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I mean I remember going, just after I was diagnosed I remember going up to my GP to get my prescription and he says, “And what can I do for you?” And I’m saying, “Oh I’ve got Parkinson’s.” “Yes but why are you here?” And I thought, you know, ‘is this how it’s always going to be. Are they never going to know anything about it?’ which is pretty much how it has been to be honest.

 
When ropinirole, which is one of the treatments that I’m on, when ropinirole first became available for, for me to take, I went up and I asked, I said that, you know, “I would like to be put on to this because it’s a better form of treatment for me at the moment because it, it was better for you when you’ve had first been treated for Parkinson’s.” And my GP just kind of looked blankly at me. He just didn’t have a clue, knew nothing at all about the treatment or anything. Didn’t even understand really what, what it was all about, and we had to come home and run it all off from the internet and run off sheets and sheets about it. Take it up to them and eventually after about three or four weeks I got put on to the ropinirole and it’s been great ever since, you know, it’s a really good treatment, well I feel it is. I don’t suppose, I suppose like any other treatment it’ll depend on the person theirselves you know? But it’s been very good for me, it’s helped me a lot.
 
What information health professionals need from patients

If they are to be involved in shared decisions, patients need to express their preferences and expectations to health professionals. They should explain how they would like to be treated and what they expect from treatment. Doctors can then take their requirements into account or help them come to terms with negative effects of treatment. According to a woman talking about her experience of pregnancy, this can help to ‘build rapport’, ‘respect’ and ‘trust’ between patients and health professionals. Patients also said they felt ‘grateful’ to their doctors for taking their needs into consideration when sharing decisions.
 

He is grateful his doctor allowed him the time to find out for himself - and decide about - his...

He is grateful his doctor allowed him the time to find out for himself - and decide about - his...

Age at interview: 39
Sex: Male
Age at diagnosis: 34
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 And when I was diagnosed, the current treatment I am on, which is Combivir and efavirenz was… I think it was… either had only just been fully kind of released or it was still on large scale clinical trial. But up to then, I think, you know that, you kind of you were hearing all these horror stories about, about treatments failing, or treatments with horrendous side effects. Not a very good success rate, even, even back, back, even in 2000. So you, know it is a complex, it is a difficult decision to make. 

 
And I am very, very grateful to my, to, to my doctor, because he let, he allow, he allowed me the time to make that decision. Even though when I was diagnosed my, my tests were pretty low and… and I have heard since of other instances where the doctor said well you must really start treatment now because… But he, it was a full, a full, and I think it was eight or nine months before I started. And I was determined to, first of all to establish whether I... whether I definitely needed to start treatment now. Because I felt that you know the, the treatment itself has probably some bad side effects in the long term. And so I, if that's the case, I want to start as late as possible.
 
And the other thing that was going through my mind and which my doctor mentioned to me at the time. He said sometimes when you, when you have just been… when you have just contracted HIV you can go through a short phase where the HIV count is, is, is very high, and you can recover from it and keep going for quite a while without actually needing treatment. So I also wanted to establish that… that I wasn't, that wasn't the case. I also wanted to, to take time to understand the various treatments available, what they do, what good they do what bad they do. And talking about… about life instinct and about death wish and about all these things yeah, it's actually a very ambiguous position to be in because… You, you read all the, all these horror stories about, about the treatments and you know a few years before then, monotherapies had been used and with disastrous effect. And anyway so, so you carry… and it's very difficult to kind of decide.
 
 

Stephen is fully involved in decisions about his treatment

Stephen is fully involved in decisions about his treatment

Age at interview: 48
Sex: Male
Age at diagnosis: 44
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And have you always felt that you’ve been involved in the decisions about your treatment?
 
Yes because it’s usually me that does most of the talking.
 
Okay.
 
They come up with the prescription or the solution whatever but it’s me that’s telling them what the problem is and what I think I need etc. and then as I said we might discuss about going on to a higher dose so it’s often down to me. She might say ‘Oh I think you should double it,’ and I’ll be saying ‘Maybe not ....but if that’s what you thinks’ best I’ll do what you thinks’ best.’ Or I might say to her as happened in the last one, ‘I’m feeling a lot worse than I had done because of the extra pressure, could we discuss increasing the dose?’ and then she’ll say ‘yes’, so. I do think I’m very involved in it.
However, when this does not happen, patients can feel upset by their encounters with doctors. For example, a man who suffers from chronic pain said he felt “upset and cross” that his doctors would not listen to him when he tried to explain why he did not want to take the medication they were prescribing.

Good communication is fundamental to a good relationship between patient and doctor, and is especially important when decisions about treatment are being made. What may seem to be the simplest and most obvious option to the doctors may not be appropriate for the patient, or vice versa. For example, a woman diagnosed with breast cancer decided to explore alternative options to the ‘serious operation’ she was offered. She contacted a charity and her doctors complied with her wishes because they acknowledged that she was well-informed. 

Conclusion

One of the most important requirements for sharing decisions is sharing information. People who want to take part in making decisions need information about their health condition and the treatments available to them. Equally, health professionals must be made aware of patients’ expectations and preferences. Patients vary in the extent to which they involve their doctor and even those who have had a bad experience with one health professional have often been able to go on to develop a positive relationship with a different one.

These days, many people from all around the world turn to the internet as a source of information about health and illness, and this fact cannot be ignored by health professionals. Patients’ internet use perhaps signifies a change in how they see their doctor’s role. Previously, doctors may have been considered the only and/or best source of information for patients. However, they may now be seen as an expert with whom information can be verified. Given that information available online is not always accurate, the doctor’s input is important in helping patients to uncover the truth and find the best option for them. 



Last reviewed February 2016
Last updated February 2014
 
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