What might go wrong when decisions are not shared?
As can been seen elsewhere on this site sometimes people prefer not to share decisions with their clinicians. In this section we look at what can go wrong when people want to be involved in sharing treatment decisions but it does not happen. Although there are various barriers, a common reason for failure is imperfect communication between patients and doctors.
In order to successfully share decisions, both the doctor and the patient need to be able to agree an agenda, voice their opinions, listen attentively and respect each other’s positions. Yet misunderstandings are common in the consultation, at least partly because patients often cannot understand what doctors are trying to say when they use big words and ‘medical jargon’.
Medically retired care officer; married; 3 children.
Well as I say communication is one of the main things that you've got to do. But if you don't know what's wrong with you, and the doctors don't know what's wrong with you, and the professors don't know what's wrong with you, and this one doesn't know what's wrong with you, it can be very hard to communicate.
Because the simple thing is doctors aren't too bad but surgeons and professors and all the rest of it in the hospitals and all that, they've got a language all of their own and they forget, they went to school for what 6 years to learn all these fancy words but we don't know what they are.
So communicating with somebody, like a professional, like a professor or a doctor or whatever, they know the medical names for them, we don't. So you've actually got to say “Excuse me, go on and say that in plain English”, because you would need to have one of these medical dictionaries and you would be there all week trying to figure out what the one word was that he said, so you've actually got to say to them look “I don't understand what you're saying”.
He might understand what he's saying but you don't so you've got to say to him “Look you have to explain it to me, in my language not yours”, and that can be quite, because an awful lot of surgeons and professors can be quite look down their noses at you kind of thing. “You're supposed to do as I tell you, what it used to be years ago”, you didn't answer the doctor back, you didn't do this and you didn't do that, you did what you're were told.
Whereas now you seem to be more open, you can actually say to them “No I don't agree with you”, without being a very bad person, do you know what I mean? Whereas years ago you don't answer the doctor back, whatever he says is wrong with you that's it, you've got to live with it. But you don't now, it's a case of you have to ask them to tell you what's wrong with you in your own, in your language not theirs.
Age at interview:
Age at diagnosis:
James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.
James' I guess so 'cause a lot of doctors don't like to tell me what's going on, you see.
Why do you say that?
James' Well it's just my consultants I think. They don't like giving bad news. My consultant he's called [name] and he always tries to. If he has to give bad news he'll wait until he finds something good. So he could have the results in two weeks of whatever he's done and you could wait two months because he'll have to wait until there's something good to tell as well. And when he has to tell bad news he usually waits ages to do it, you know, just in case something good will happen.
Always tell what. Tell the, tell the young person everything that's going up and use small words. 'Cause sometimes doctors use all the medical terms and terminology and sometimes even the parents don't know what they're talking about. So it's like use words that every day, you know, use everyday English to explain what's going on 'cause it's a lot easier to deal with when you know what you have.
Have you had experiences of that, of not understanding when they use long words or medical terminology?
James' Well it's, it's more of that the new doctors, they like to impress people by using all these scientific terms.
What do you mean by new doctors?
James' You know just doctors that have come to a new ward or come to this hospital new and.
Mother' Newly qualified really because.
James' Yeah newly qualified.
Newly qualified ok.
James' And they like to use all these, these, this terminology because they can I think. It's like, you know, we've learnt all this stuff we might as well use it. And they, I think they forget that we have no idea what they are talking about. We do not know what they are saying. They could just be saying blah, blah, blah as all we could, as you know, for all we know.
And what about your consultant, the person that sees you?
James' Now he's always been very good. He's always used quite, he's always used small words hasn't he? But he's been with the hospital for ages, years and years.
Ok and the nurses. What's your experience of the nurses?
James' Oh they're very nice people. You know you. 'Cause I'm with the same nurses all the time, you see, 'cause it's, it's the nurses that go to the hospital, stay there for years in the same place. So you get to know the nurses and they get to become your friends rather than just nurses. You know so it's just a very friendly atmosphere, very nice people.
Age at interview:
Jamie has a heart condition called hypoplastic left heart syndrome. He was diagnosed when he was six days old and underwent pioneering and life saving surgery. He gets breathless very easily and is not allowed to play any contact sports. Jamie absolutely loves football so at home he plays it in the garden with his sister and a neighbour.
Now when he explains things to do with your condition do you understand when he talks to you or sometimes he uses language that you don't understand?
He uses language that I don't understand they're like mild abrasions. I don't get what he means by mild abrasions. And I, in the, and I do get, I understand some words like, he bruises easily, like he bleeds under the skin. And it's like and that's and just talks about that a lot of the time.
Do you say anything to him? Do you say, 'Excuse me I don't understand, can you explain this to me?'
No. I didn't get a chance because he was, he were talking to me mum all, he was talking to my mum all the time.
So he doesn't talk to you?
Well he sometimes does but not all the time but he just talks to mum mostly, my mum mostly about what he's going to do, what I'm going to do.
Ok. And then your mum explains to you?
People found it hard to make decisions with their doctor when they felt their concerns or experiences were not taken into account. They were also unhappy when their doctor did not pay attention to their agenda, such as aspects of the disease or treatment which were impacting on their quality of life. For example, when a man who had Parkinson’s disease developed breathing problems because of his medication, he was unhappy that his doctor wanted him to stay on the treatment because it improved his tremor. Eventually the doctor took on board that he was less concerned about his tremor than his overall quality of life. This experience was also reported by patients with other life threatening conditions, such as HIV.
A 33 year old black African female with a young 5 year old child. She was diagnosed as HIV positive as part of pregnancy screening.
In-grown toenails… The nails, instead of growing outwards, they can grow back in and it's very, very painful. And it won't stop doing that unless you stop taking the medication. So I had to go for surgery for my toes, that's a really… they had to pull it out and cut off a big chunk of it, it was quite… it was very problematic. So I had to complain to the doctor. I would say my doctor was slightly difficult, I know she was just aiming at a very good CD4 count but I was really suffering... every time I went, I complained about the headaches, the rash, my skin really got bad. She explained again that it's… again because my immune system's going up, so that's why I was getting the rash. I was tired, breathless as well. I used to get breathless, yeah. But when I really had the ingrown toenail I really couldn't take it anymore, I said no that will have to change…
Age at interview:
Age at diagnosis:
Student, single, no children. Lives at home with mother.
And I went into [Hospital] because they wanted to sort out the methotrexate problem, because they said, 'You can't come off it because we don't have anything else to give you'. And I said, 'Well I'm not taking it any more because'' It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren't really too bothered. They said, 'If you're not on it then you know you're, you're not going to be healthy enough'. And, I didn't care. I didn't care if I couldn't do anything, I just didn't want to be sick any more.
So I went in and various different doctors came to talk to me 'cos I was under Professor [name] at [Hospital] and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, 'No, I'm not taking it. You can't make me take it because I don't care if I'm, if I'm under 16 I'm not going to take it'. And I just said, 'No'. And they said, 'Well we'll give you anti-sickness tablets'. And I had tried those, they didn't do anything. I said, 'But they don't work so I'm not taking it'. So they eventually [laughs] sort of, they listened to me.
I'm very involved in how it's managed and I make it my right to be involved as well. I think some people, I wouldn't say they get walked over but they feel that they don't have the right to say no because it's difficult, I must admit when you've, if you have got quite an over, over-bearing consultant, I mean my consultant she has to be strong and she has to be pushy because she has to fight for a lot of people to get the medicine they need, but that also in turn means that you have to be strong and have to be willing to fight if you disagree about something. So, it is difficult but you just have to have the strong will to do it. And you pick it up along the way.
People need to have enough information, which is presented to them in a way that they can understand, in order to participate fully in sharing a decision. If they do not feel they have enough information, or they feel there are mixed or contradictory messages, this can affect how they will feel about accepting a decision.
With rare or complex conditions, it may be that the doctor is less expert on the condition than the patient. This was sometimes described in people’s encounters with generalist doctors, like their GP. In cases where the patient had undertaken research into their condition, some people described finding it difficult if they did not feel the doctor was interested in or listening to what they knew and had found out.
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 their selves you know? But it’s been very good for me, it’s helped me a lot.
Age at interview:
Age at diagnosis:
Company Director; married with 1 child.
Well the role of the GP is very limited to be honest. They're very general, I mean their knowledge is very general. She knows that I, I think by now to be honest I know probably more information about the heart diseases than her because after I've, you know after what I've read, about you know about heart disease I think I'm more knowledgeable than her!
She was very general. She wouldn't say anything other than like, "Eat moderately, don't, avoid junk food and fatty food," which I know you know, she wouldn't add anything to my case, I mean she wouldn't add any benefits.
Actually I don't see her, I mean I don't, I'd go to see her if I had bad flu or you know something else other than the heart disease, because I know if I have a problem I know what to do myself now.
Age at interview:
Age at diagnosis:
Mike (aged 54) and Gill (aged 49) are a married couple with 3 adult children. Mike retired as a Fire Master. Gill is a management consultant. Ethnic background/nationality' White British.
Certainly there's a definite lack of awareness of MND with, with health professionals. [Mike writing on whiteboard]. Our GP openly admits, you know, Mike's the first MND patient that she's ever had, and might be the only MND patient that she ever has. So of course they're very much, they learn from what we learn, you know. And we've become almost the experts in MND in our situation. The frustrating thing is that when you do go out of the team - the team that work with us are, are superb, absolutely superb - but when you're taken into an alien environment, if something happens and you've got to go to a different hospital or whatever, it's so frustrating because there's so little knowledge about MND. And as I say to people, the people try to treat him as a normal patient, and he isn't. There's other factors that need to be taken into consideration. So for us there, there needs to be more awareness at the medical level of what actually is going on, you know. And there's some horrendous stories on the websites about how people are treated, how MND patients are treated when they go in. And God forbid, if Mike was ever on his own, I don't know how he'd cope with it. People that are on their own. So there needs to be more, more awareness about MND. It seems to get forgotten. Because it's such a rare disease, it gets forgotten, you know. One observation that I made just recently and I passed comment about it, when we go to the local hospital, the hospital waiting room is full of information about MS. There's not a single piece of literature about MND. Now it could be that Mike's the only patient that goes there with MND, but it doesn't matter. There should be information in that clinic about MND. So you just feel as though nobody's listening really, you know.
The relationship that patients and their caregivers have with health professionals is an important factor when it comes to making decisions. Sometimes people feel the way they are treated by their doctor, and his/her attitude towards them, either helps them to make decisions or stops them from being involved. For example, a woman who had been told that her unborn baby had a serious, life threatening condition was still trying to absorb this shocking news while the doctor seemed to be pressing her to make up her mind whether to end her pregnancy. She said the consultant was ‘not sympathetic or empathetic at all’. He wanted her to quickly decide on a termination, unhelpfully telling her she was young enough to have more children.
Doctors who appeared to dismiss people’s worries and concerns could leave them feeling unfairly treated. Some even suspected that their doctors doubted their account of their symptoms.
Widow, 1 adult daughter, living alone, retired university lecturer.
Anyway I went to see the specialist, and he was very cavalier and he only watched me walk over three yards. So you couldn’t really see within three yards whether my gait was changed or not. It wasn’t enough to see that. And he obviously didn’t like the fact that I thought I had Parkinson’s and that I had been reading about it, because he then wrote a letter to my GP saying, “[this lady] thinks she’s got Parkinson’s, but of course she’s been reading about it. I will see her again in a year’s time.” Well, this didn’t solve my problem at all, because I knew there was something wrong with me. I guessed it was probably Parkinson’s and this man refused to diagnose it for me. So I went back to my GP and I had to ask to see a private specialist, which I shouldn’t have to have done. But this was the only way I seemed to be able to have to get it diagnosed.
Carers also reported feeling ignored and unhappy with the way they were treated. A man caring for his wife who had dementia said' ‘Hospital staff were not taking any notice of what I wanted to say for and on behalf of my wife’.
Sometimes decisions are not shared because the doctor decides to take control and tells the patient what they should do. Some patients can find this helpful, particularly if they have just been given bad news about their health. (See ‘Different types of doctor patient relationships’). However, other patients prefer to remain in control of decisions about their health even when the decisions are serious and difficult.
But he says, the surgeon came and seen me, he says' "You don't have to get your whole breast off," he says.
"It's just we're going to cut through this lump and take it away."
I says' "No." I says' "I want the whole breast off."
I says' "Because I don't want radiotherapy and I don't want chemo," I said, "and I'd be happier if you took the whole lot off so it will balance me out."
So whether he was pleased about that or not I don't know but that's what I wanted so I got that done and that was in 1996.
Did they try to change your mind?
Yes they did, aye, aye they did. They said it was so silly.
I says' "Well what's more silly is having one off and one just half there." I says' "No." I says' "And anyway I don't want the treatment, just take it all off."
So that was the answer they got. But I demanded it so got it.
When people were not happy with the way the doctor dealt with them they handled it in different ways, either by accepting that was the way things were, choosing to see another health professional or, in rare cases, explaining to the doctor that this was not the way they wanted to be treated.
Zoe is a hairdresser who lives with her partner and has no children. Ethnic background/Nationality' White British.
So I avoided doctors for a long time. And then my partner now, said, “Look you've gotta get this sorted.” And I went in and I saw my doctor and, yes I think he did it for the right reasons because he knows… He must've realised straightaway I was stubborn - I will do things my own way - but he was also very rude and obnoxious, and I did feel like wanting to change my doctor but then I thought well maybe he's doing it because I am that kind of awkward person that, I will only go in if need be. But at the same time he was still quite rude - I suppose if somebody's not going to look after themselves then yes they've got every right to be rude - but it does make it hard going into see them.
And I just luckily enough my nurse, she actually looks better, looks after me a lot better, than my doctor and I go in there and we'll sit and we'll actually chat and she'll ask me how I'm feeling, what's it like when I take my insulin.. she suggests little things, you know, like just going out, going shopping in, in the daytime. And I've felt that she has made a difference to my health and wanting to get better because she's took time to understand me and my problems first. You know, to realise, you know, it's more than just giving out somebody a pill, or saying, you know… Like she'll say, “Just, you know, if you're going to smoke just cut it down.” You know, she's given me little guidelines like 'Gradually do this… Not, 'That's bad, stop it.' 'This is like this, stop doing that.'
And like she understands like, it's like, because of the size of me, like a lot of people automatically think you eat all the time, and it's like it's not often that case. I mean [partner], he actually eats like anything, I've never seen, you know, somebody eat so much and it's like, how can he be the size he is and what he eats and what I eat, how can I be my size?
But I purely know now it's exercise that's going to get my weight down. And you know, I'm not a junk eater, I like fresh food, I like vegetables, I like fruit, but when a doctor just looks at you, like my first doctor, and he says, “All I could see is.” because like I said to him, “Every week I went in with my diet plan.” And he said, “But you can't be eating that because of your size.” And I said, “Well I, why would I lie, I'm coming to you for help? I have no reason to lie I want to change, you know, you know I, I don't wanna be this size.' But obviously there's something wrong - that's why I was going to him.
But it took like, for him to find out more about me, to make him realise that, you know, just because I'm a big girl doesn't mean I sit and eat all day. And like I have exercise and I go out, I used to do a lot more exercise than I do now which I will get back to, but it took that, you know, because at first he was like, “Oh I just give you this pill and I'll just give you that.” And it wasn't that, I think it, it took that little bit more, for him, I think to open it up and say, you know, you can treat this by doing this and doing that, but yeah doctors are the, the scariest of things.
Age at interview:
Age at diagnosis:
Civil Servant, cohabiting, no children. Ethnic background' White British.
Initially it wasn't, I didn't have a very good relationship with my consultant. He had the view of, 'You will do what I say and not dare to question me'. But once we'd had a little discussion or two and we'd kind of evened out the doctor- patient relationship slightly. I didn't like being treated as a shell, as a disease. I was a person. I wanted to be treated with a little bit more respect and humanity. And perhaps I shouldn't have done but I told my consultant that, and from then on we've got on famously and we get on really, really well.
I wonder if your age had anything to do with his attitude towards you?
Possibly. He was very much old school medicine. And I don't think many people would have said what I said to him because he was quite, he had a bit of a reputation for being a sort of old school scary doctor. And I think a couple of the nurses were a little bit, wouldn't have dared question him as well, but I was the patient, I had nothing to lose by doing so. And I think that really helped. Yeah I get on really well with him now and have total respect for him.
Other factors, out of the doctor or patient’s control, can make sharing decisions more difficult. These include procedural issues like appointments being cancelled, having to wait a long time before getting an appointment, rushed appointments, lack of time to make decisions, lack of continuity of care, or not being able to see a trusted health professional. Another procedural matter, which patients felt blocked their ability to make decisions, was when doctors were forced to stick to rigid protocols. Treatment that seemingly has to follow a strict protocol can upset patients, especially if they feel that they are not being listened to and their own experiences are not being taken into account.
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.
Children' 1, aged 17 months at time of interview. Occupation' self-employed consultant. Marital status' married. Ethnic background' White British.
That was an example of, of her sort of collaboration with me I suppose in terms of how to proceed with my care, and it always felt that I was in control, which is very important to me. I suppose I was fairly well informed as a patient, as it were, and she of-, she said a couple of times to me, “That's not the sort of thing most people ask me”. Or, she did say to me, “You are very well informed”, you know, and gave me that feedback.
But she, there was one example where I discussed with her at the late stages of pregnancy the fact that I didn't understand the need to clamp the umbilical cord straight after delivery, because I'd done some reading around it and I'd talked to a couple of friends and I couldn't appreciate why that was done. And the only conclusion I could draw from what I'd read was that it was actually sort of from a clinical expedience point of view that that was done, in order that, “Let's clear up the mess, let's get this baby sort of separated, and then we can get onto clearing up” [laugh], at a basic level. Whereas I was, was reading some stuff that would suggest that there was actually some benefits in retaining the umbilical cord intact for several minutes after delivery, in order that some of the goodness, nutrients, oxygenated blood from the placenta could be taken in by the baby before that supply got finally cut off.
Because otherwise the baby would possibly have to reproduce those blood cells and so on for itself. And that for me seemed a much stronger set of arguments in terms of the baby's needs and to some extent my needs as a mother than some need for a doctor to sort, to clear up the labour room quickly [laugh]. And so I went to her and sort of explained what I'd read and said, “Am I missing something here?” And she, and she was very honest with me and she said, “That is to do with clinical protocol, and yes, you're right, that to a large extent the protocols around clamping and cutting the umbilical cord are not necessarily based on the baby's best interests”.
She ended up essentially saying that to me, which confirmed my suspicions, and I don't sort of have a problem with that as such, although I think it's a bit curious. What I was then concerned about was, was my ability to express my wishes to not have that protocol followed tightly with my delivery if possible, and that I could benefit from having, to leave, leaving the umbilical cord intact for some time before then, until it stopped pulsating, until it, before it was cut. And so we got into that level of discussion and I felt it was very important from my point of view to be able to have those conversations.
And did you, were you able to put it into your birth plan?
Exac-, yes I did. I did put it in and it happened and, you know, I felt, I felt very happy about that. But I needed her guidance to some extent and I think I - you see, I'm not even sure that if she'd have come back to me and tried to sort of, tried to give me, justify the protocol-based approach, I don't think I was particularly open to persuasion, because the evidence wasn't there that that was sensible from my patient, my own perspective. And so she could, she could deal with me as a fairly challenging patient, I think, and I think, you know, that helped to build a rapport and helped me to respect her and to trust her.
Some patients also described feeling like they were on a set pathway or “conveyer belt” and wishing for more time or opportunities to discuss things with the doctor.
Dorothea is a widow and has grown up 3 children. She is a retired primary school teacher. Dorothea's ethnic background is white British.
Is there anything perhaps that you would have liked to have had more say in?
Well, it took me such a long time to get used to the idea that I was actually going to have a hip replacement. I know you have to wait for the operation so I had six months or so to decide against it. But I was, I wasn't pressured into having it, it was just it looked like, ‘Oh, next patient. Yes, x-ray says this, do the injection, do the operation, on the list, next patient. What’s the next patient?’ It looked like a conveyor belt to me, and obviously, with the targets that the NHS have to manage I realised I’m part of the system and I had to take my turn and do what they decided is the right thing.
So I went along with it, but I was, I, I just, I hadn’t got my head round actually accepting it. And, at my pre-assessment, which was very thorough, at the hospital, everybody talked me through it very, very well, the nurse, the occupational therapist, the anaesthetist, and everybody, accept the consultant who said, ‘Sign here, we’re ready to do the operation anytime from now.’ And I suppose I must have had a list of risks, I can't remember having them, and it was seeing the consent form just like that, I, I did, I felt quite that I wasn't a person I was just doing it because I was told to do it. And I knew I was going to have the operation, but it was, it was a bit of a shock the way it was presented, just like that. It’s, it’s coming to terms and I didn’t come to terms with it until I was on the table.
Age at interview:
Pregnancy ended in 1998. No of children 2 + . Ages of other children at interview' 6, 4. Occupations' Mother - nurse, Father - warehouse manager. Marital status' married. Ethnic background' White British.
And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him.
Unfortunately, I don't know whether he hadn't read our notes before he came in or what, but he was probably the most unhelpful professional that we met. He seemed very, he was like, 'Right, you've made the decision to terminate so let's just get on with it,' and, you know, 'Go home and forget about it.'
And in fact, we were wanting sort of more information from him and he said, you know, explained about taking the tablets 48 hours before you want to go in, and so he was saying, “So, if you want to take them now and come in, in 48 hours,” and I was saying, “No, you know, I need some time to think about this', and I was thinking more like, we'll be coming in, in 2 weeks' time.
He seemed, he explained to us that for some terminations you can have under scan, under ultrasound you can inject the baby's heart with potassium, if you like, to do the termination, and then you give birth afterwards, which for me was horrific and was just not an option.
I just can't imagine, you know, it was really, one for me, I didn't want to give birth to a baby that was already dead, to me that was even worse than the situation we were in. And to watch it on screen that happening to me just sounded absolutely horrendous, just cruel.
So when I said to him that I didn't want that, he seemed, he was almost like quite surprised because I was telling him what I wanted, rather than him telling me what was going to happen and me saying, “Okay.”
So I said to him I didn't want that. I said that I wanted to give, just to give birth and, you know. And the fact that I said to him that I wanted a couple of weeks to think about it. As well as the practicalities of sorting out baby-sitters. [husband's] parents were away on holiday so we had to wait for them to come home and things like that. And when I said to him, “I want to wait a couple of weeks,” his, his comment was, “But you do realise your baby might be alive when they're born?”
Which was like, 'Yes.' And that seemed to be a problem, “Well, that means you'll have to get a birth certificate,” and he didn't for one minute seem to think that I wanted, I wanted a birth certificate. I wanted my baby to be alive when they were born because I wanted them to die with me, and he didn't seem to have thought about that.
And, you know, I can understand that unless you've been in that situation you wouldn't think about things like that, but it seemed like he had a very narrow view of what happens. It's like, you've decided to terminate this pregnancy so 'let's just get on and do it and not think about it, go home and get pregnant again' sort of attitude.
And he didn't seem to grasp the fact that this was my baby, and I want this baby but I'd found myself in these circumstances, I want this baby to born alive.
Sometimes people said that they had needed emotional support to help them come to terms with their options before they could engage in tough decisions. For example, a man with prostate cancer said he would have liked help from his surgeon to decide what to do after his diagnosis, but instead he got ‘no specific advice’ for himself. Another man with HIV was upset by blunt communication from his consultant but a counsellor helped him realise that he had treatment options.
A gay man of British/Irish descent who works full-time and is in a long-term partnership.
I can remember him (the HIV consultant) saying we did another test and we've measured your T cell count, your T cell count is 400, that indicates that your immune system is on the brink. Now I clung to the fact that it took ten years for… ten years for you to progress from initial infection to AIDS and death. But here was I finding my immune system was already half gone… and I was like oh my God, I didn't have a clue what a T cell count was. And then he said you'll probably have to start AZT immediately and then it was explained you know… then I was like out of his office and there was obviously the counsellor who was actually completely different you know, he was much more sympathetic and human. He took some time to explain things and make an appointment, a follow-up appointment for me. And you know I mentioned the AZT and he just said don't worry about that you know…
In the situation where it is thought that there is only one option available to treat the condition or illness, then the only decision to be made can be whether to have that treatment or not. This is a very important decision, but sometimes people do not perceive it as a “real” choice. Occasionally however in this situation, another possibility may arise, as the couple below describe.
Father' Company director, married. They have three adult children. Ethnic background/nationality' White British. Mother' Retired NHS manager, married. They have three adult children. Ethnic background/nationality' White British.
Mother' They kept him [son] sedated for about five days and then decided to bring him round again and do another CT scan. He was still fairly agitated, and the CT scan showed multiple infarcts across the entire surface of his brain. Now this was about eight days in to the attack, to a point where I thought in my ignorance that he had survived and therefore he would survive. I thought he was desperately ill, but I thought he was safe. When they had the second CT scan, actually the third, because they took one in the first hospital, but the second one at that ITU, they sent it to the regional centre for an opinion. And the opinion was that he could not survive. But if by chance he did, he would be in a persistent vegetative state.
So a doctor and a nurse took us aside and told us to prepare ourselves, and in a roundabout way asked us if we wanted to turn off the life support. And this was a desperate shock. Because no way had we been prepared for the idea that he would not survive. And the longer he survived, the more likely it seemed that he would. And we came home kind of on autopilot.
Father' Yes, we had to drive about 12 miles from that hospital to our house. And it was in some kind of odd state. I can't tell you how I got home.
Mother' We were just driving slower and slower, just kind of…
Father' But they told us to go home and consider our options. But they didn't explain to us what our options were. And because my wife has worked in the medical area for quite some time, we could conclude what our options were.
Mother' Which was do not resuscitate and organ donation, those were the only things I could think of. So I called one of my colleagues, who's actually a bereavement counsellor. And she came immediately and was very supportive through…
Father' It's okay.
Father' It was a very black time.
Shall we take a break?
Father' I think, no, it might be better if we can carry on.
Mother' Yes. While she was here, the consultant rang and said, “No, forget all that. Don't worry about that for the moment. What we're going to do, we've got a plan. We're going to put him back to sleep for maybe a couple of weeks and then wake him again and see how he's doing”. And she immediately said, “You know, if they've got a plan, it's not as bad as you might have been led to believe. They wouldn't have a plan if it was that bad. They'd just let it go”.
Father' The key thing was that they didn't know. They didn't know what the outcome would be. They'd sent a photograph to a local centre of excellence, who'd gone, “Oh, it's desperate”. But they, this particular consultant obviously thought, “Well, we don't know that that's the case”.
Father' “We're not going to give up on this lad yet” was his words when we saw him the next day.
Nobody could say, “This would happen.” What they should do is be sure if they say, “This will happen” that that is the case. If they don't know they should say, “These are the possibilities. And these are, you know, this is the possible outcomes.” Or, you know, they need to be more careful about saying, “Thi
When patients feel they have not been listened to, or if they disagree with their doctor’s advice, they may seek information from other sources (e.g. friends, family or the internet), decide to stop seeing their doctor or choose to make decisions about their treatment without professional help. For example, a woman with chronic pain decided to disregard her doctor’s advice to take painkillers and instead she chose to pay for the help of a chiropractor. However, if the patient feels abandoned and deprived of crucial support they may be reluctant to seek help on another occasion, which could have lasting consequences.
Di is a married teacher with two adult sons. Ethnic background / nationality' White British
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.
Age at interview:
See 'Brief outline'
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.
People who feel they have been ‘bamboozled’ (as one woman put it) into having treatment without being given enough time to think about it and discuss the options can regret the decision for many years. A man who discovered, through a PSA test, that he had prostate cancer said that he bitterly regretted having the test – which was offered routinely and without much information - since it was so hard to know what to do about treatment.
It started about 18 months ago when I was working in Washington DC in the States, and I went to a local urologist because I had marginal impotency problems and I wanted him to prescribe Viagra for me, which at the time was difficult to obtain through a GP here. He agreed to do that but then he asked me whether I'd recently had a screening test called PSA and I immediately responded that I'd never heard of PSA and what did it stand for and what was it for?
And I don't think I really took in what he was saying but I agreed to take the PSA test primarily to humour him rather than because I'd really considered all the risks and benefits of taking such a test. He did examine me with a digital rectal examination at the time and that was normal and since I'd got my Viagra tablets I simply forgot about visiting him. And so I was somewhat surprised about 3 weeks later when he telephoned me about 10 o clock at night at my apartment and said my PSA level was very high, much higher than normal, it was about 9ng per ml and that I should take it very seriously although it didn't necessarily mean I had prostate cancer and he suggested I have a biopsy straight away. Well I was just about to finish my turn at Washington and go for a month’s visit to Venezuela and a biopsy wouldn't have been appropriate. But obviously I did feel a great sense of, well fear I suppose, because this was the first intimation that I might have a problem in this connection. I didn't really have any symptoms and suddenly I was faced with my own mortality. So it was a most anxious time and I remember rushing round to the book shop and buying 4 books on prostate cancer and reading them up and being absolutely horrified about the treatments on offer. Surgery seemed to me more like butchery than surgery and so I was finding it very difficult to sleep at that time.
Age at interview:
Retired careers officer; married; 2 children.
That decision which I made back in 1981 was the worst possible decision I could have made, I was referred by my GP to an orthopaedic surgeon and because he told me that he thought there was very high success rate for a laminectomy I didn't question him sufficiently.
I didn't have either the confidence or really the medical knowledge to and I relied on my GP to have sent me to what he thought to be the most appropriate specialist. I now know that to have a good chance of having back surgery you must go to a specialist spinal surgeon and preferably in the specialist spinal unit but those are in very, very short supply.
I blame myself terribly that I didn't make those enquiries, I suppose I shouldn't blame myself but if I could change one thing in my life, if I could go back and rewind the tape, that is what I would do and anyone who has ever asked me about whether they should consider having spinal surgery I have always said to them “Please, please educate yourself as to the chances of success, the success rate with the surgeon who will be operating on you, ask the awkward questions and if possible try and avoid spinal surgery”.
Because I think when I had it done there was a much gun-ho sort of attitude, it's now I think being appreciated that actually the success is much more like 50% and that's on a good day with a good surgeon and that if it can be avoided it should be. I mean obviously there are some conditions, some circumstances where people have bowel or bladder involvement, they have to have surgery but if I could go back and change that decision I would work, have worked far longer with specialist physiotherapists to try and strengthen my back, to try and avoid the surgery if I possibly could.
I mean I had had physiotherapy, I had had some advice and nothing that had been done had actually helped me to be fair but if I could change things, I would very much have wished that I could have done that and had that sort of input and perhaps even been sent to a specialist rehabilitation unit where there was specialist knowledge, which is quite difficult to access on an outpatient basis but I'm sure it must exist somewhere. I hope, but I regret that decision terribly and so does my husband. You can't go back.
People do not always want to be involved in shared decision making with their doctors. For those who do, there are potential hurdles which may need to be overcome. These include difficulties with communication (for example people not feeling they have been listened to, or doctors using language which is not understandable to the patient or their family), or the patient feeling that the doctor does not have (or has not shared) enough information and options with them .If communication does break down it can impact on how people feel about the care they have received and can also potentially impact on their future experiences of seeking healthcare.
Last reviewed February 2016
Last updated February 2014
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