A-Z

Shared decision making

Different types of doctor patient relationship

It is often said that relationships between patients and doctors have changed dramatically over the last 50 years. In the 1960s it would have been rare for a patient to question their doctor’s advice, now a more equal relationship is more common, However There remain some cultural and individual differences in this expectation, for example some people( doctors and patients!) still may perceive the doctor to be a figure of authority, whom it is not appropriate to challenge.
 

Rose was brought up to accept her doctor’s advice without question. She is more confident now and...

Rose was brought up to accept her doctor’s advice without question. She is more confident now and...

Age at interview: 50
Sex: Female
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And I know when I started to have the symptoms of the menopause I went to see my GP, when I could no longer manage it myself, and I took their advice and I think that goes back to my working class background in that I’ve been brought up to accept what other people tell me and to deal with it. But actually in hindsight, I shouldn’t have done that, I should have taken more responsibility for my own wellbeing and done that research earlier and asked for that second opinion earlier, asked for that expert advice earlier. But I think going back to my working class roots GPs were Gods and you didn’t think to ever challenge or question their advice to you. And we need to be doing that more because as I get older and I get more educated and I learn more, I realise they’re not Gods, they’re like everybody else they’re doing the best job that they can with the limited amount of information and limited amount of time that they’ve got.

 

Discusses her experiences of finding information about high blood pressure.

Discusses her experiences of finding information about high blood pressure.

Age at interview: 71
Sex: Female
Age at diagnosis: 26
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They didn't explain anything in those days. Nothing whatsoever, everything was hidden away as it might be. It was like having a doctor who said 'Come in, sit down and what can I do for you?' with a very straight face, and that was that, and then you went, and nothing was explained whatsoever. I've learnt more about things in my older days than because now they tell you all about different things.

I've picked up a leaflet once or twice from the Heart Foundation, when I've been at hospital and I've seen these little booklets about high blood pressure, but I still wouldn't know what causes it. I do like to know things but I just I don't know enough. I mean some of the books you get from the library they're too technical. You can't understand them so it spoils it really.

I don't think I've ever come across anything to do with blood pressure which I've understood. I think I understand more of this doctor that comes on the radio. I can't even remember his name but he's a great person, people will phone up about medical things and he will explain it completely down to earth, he doesn't go into all the technical things which is nice.
Patients with long term conditions such as diabetes, high blood pressure or epilepsy are now often encouraged to monitor and manage their own health with support from specialist nurses and other health professionals. This has coincided with changing attitudes to doctors and other professionals, easier access to information about health, a tendency for people to see themselves as consumers of healthcare (rather than patients), growing use of complementary approaches to health and acknowledgement that service users have a right to guide how publicly funded health services are run. The ageing population and increase in long term health problems also mean that if patients do not take a greater role in managing their own health conditions, existing health systems may be unable to cope. The following clip describes a patient’s wishes that this is also complemented by having the time to have conversations with health care professionals and to have the time to ask questions.
 

Suggests that doctors need to make time for patients to ask questions.

Suggests that doctors need to make time for patients to ask questions.

Age at interview: 81
Sex: Male
Age at diagnosis: 79
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Yes, I think that today, going back on when I was in hospital in '47, that over the years there has been a closer, far closer co-operation between doctor and patient, and nurse and patient, than ever there was, but it's got to be even better. And I feel that if the doctors, I know again they're under pressure, they've got a big volume of work to do and they can't spend too much time with a particular person, but if they could make that small amount of time they have count, by answering a question, allowing a question to be asked. Because in some cases, some patients who are rather timid will not ask. Now I would because that's part of my makeup but those that are timid can be reassured on certain aspects or if they've got a weak heart, 'what do you mean a weak heart?' 'How's it affecting me personally?' and 'Should I do this?' 'Should I carry on living like this?'

We know that you have this aftercare and we know that you get this little booklets and things like that but it's not the same as the doctor or the consultant at the point of being sent home, telling you the main operative things or answering a question. 'Are there any questions you'd like to ask me?', providing it's not long, they may have to readjust the whole thinking but I think that won't take place until we have more doctors, more nurses, more places, and people have got more time to do what they would like to do.
Some branches of specialist care, for example antenatal care, women’s health and HIV, have led the field in encouraging a collaborative approach. This is evident in some of the comparisons people made in our interviews. For example a man who had become used to a more collaborative approach to treatment decisions with his HIV consultant remarked on the very different ‘old school’ approach of an oncologist. 
 

Contrasts the collaborative approach of his HIV consultant with the ‘I prescribe/you take’...

Contrasts the collaborative approach of his HIV consultant with the ‘I prescribe/you take’...

Age at interview: 37
Sex: Male
Age at diagnosis: 34
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And then my oncologist came in. Now the oncologists at that time, unlike HIV doctors, were still on rotation. And so I'd had this particular one for six months and he was very much an old school doctor where I prescribe - you take. He didn't really work very well with me on the level that I had been used to. And he said well you know the one that you have had hasn't worked and we are going to switch you now to this one other option. I cannot think what it was called, but it was something that had been used in the States. I think it had been used for ovarian cancer, it is highly aggressive and he said you know, he said we think that it may work for KS (Karposi’s sarcomas), there have been some trials in the States and it does seem to be working for KS. Now it is much more aggressive than the other ones you have, he said. So you know it will have quite a negative impact on your white blood cells, and you will lose your hair, and this, and he went through this list of side-effects… these are the possible things that could happen. And he's standing there telling me this at my bedside and my clinic doctor is there standing next to him making notes. 
 
And he finishes up and [name of HIV consultant] my doctor turns to him and says what, and you really think he is going to take that? And ugh [name] the oncologist says 'Well. Yes' He looks at me and I look back and look at him and I just laugh and [name of HIV consultant] laughs back, and I said, 'No I won't take that.' He said that you have to because it's your only choice. I said, 'No, no, no it's not the only choice.' What I will take is the medication you were giving me before. But I will take it again at three weekly intervals, not four weekly. He said that doesn't make any difference, he said, me moving it a week wouldn't have made a difference. I said you moving it a week made the difference, I tell you. I know my body. I know how I felt after every three weeks when I had the chemotherapy, the soothing effect of that I felt.
 
 

Harriet compares the approach of British and American doctors - she thinks that British patients...

Harriet compares the approach of British and American doctors - she thinks that British patients...

Age at interview: 55
Sex: Female
Age at diagnosis: 20
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 While I was under the care of the [hospital] I remember having some real issues with the difference between the way consultants and doctors treated patients in this country and the relationship that I had with them in the United States, which to me was much more human at the time. In the USA a patient was able to talk to her physician, ask questions, challenge and be part of the healing process, where in Britain, patients were expected to be good listeners and do what they were told. I found that very, very challenging.

 
I remember asking my first UK consultant why I should trust him with my life when I got to hospital, and [laughs] his reaction was anything but positive as far as I was concerned. He was trying to blind me with science, which he couldn’t because I understood all his big words, and I wondered why he felt I shouldn’t I be able to ask him what he knew. However, I got good medical care. I don’t want to fault the care, and after about fifteen years, they cut me loose. They said, “Well you’re done. You’ve survived fifteen years. It’s not going to come back. You’ll be fine.”
 
In this section we show a range of approaches to the patient/ doctor relationships, which we illustrate with examples from people who have consulted for a wide variety of health issues, from pregnancy to end of life care.

The strongly directive approach

This approach was very familiar to some of the older people we interviewed, who commented that when they were younger they would never have dreamt of questioning what the doctor advised. People sometimes valued this approach and suspected that many others do not really appreciate being asked to make choices about healthcare.
 

Explains why she preferred not to have the responsibility of making a decision about surgery. She...

Explains why she preferred not to have the responsibility of making a decision about surgery. She...

Age at interview: 67
Sex: Female
Age at diagnosis: 49
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They didn't have lumpectomies so it wasn't so popular at that time.
 
And I know I was recommended a book to read afterwards on breast cancer and it said if you're told you're going to have a mastectomy ask for a second opinion.
 
I found that amusing as I'd already had mine when I read this. But I didn't think of asking for any other treatment or anything. I just took it that doctor would know, or the surgeon would know best, and I never sort of knew that there were different treatments. But I did find out, we had a talk from the breast surgeon and they sort of divided the breast up into sections and mine was right near the nipple. And apparently that area they prefer to do a mastectomy anyway rather than just a lumpectomy.
 
So I was quite relieved about that. I thought' "Oh well, I did have the right treatment then," you know. And I was grateful because really it's a case of a gift of life more than anything. So I'd never ever think that a surgeon was giving me the wrong treatment.
 
I think it's difficult for people nowadays if they're asked which sort of treatment they like because it's quite a responsibility. And often people, although the surgeon explains, I think it's often people feel they'd rather just be told what the surgeon would like to do.
 
Apparently nowadays that is the choice, well it is in our breast clinics - that they can have a choice of just whether they want the whole breast off, whether they want a lumpectomy, or whether they'd like to leave it to the surgeon to think what he'd like best.
 
And I'm sure I would leave it to the surgeon for what he thought was best if I had choices like that.
 
Sometimes there is little uncertainty about the best course of treatment and the doctor feels justified in giving a very clear steer. A woman with breast cancer told us that she had hoped that she would be able to have the lump removed but her surgeon told her that would not be sufficient and they she needed to have a mastectomy. She trusted his advice.

There are also occasions when people prefer to be told what to do: sometimes the burden of having to weigh up different options is too great, especially when the consequences may be serious or one is feeling too unwell.

One of the problems with a very directive approach is that if the side effects are very unpleasant or the treatment does not go as planned the patient can be left feeling that they were poorly advised, or at least unprepared for the consequences.
 

Verite’s doctors were directive in telling her which breast cancer treatment to have and she...

Verite’s doctors were directive in telling her which breast cancer treatment to have and she...

Age at interview: 61
Sex: Male
Age at diagnosis: 54
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 I had tamoxifen for two years. Then I was told the newest thing is that now you go from tamoxifen to Arimidex. Which I did. 

 
And then my oncologist, Professor [doctor’s name], is very well known. He came back from the San Antonio conference in America, which is the big one, and said, “Oh I’m putting you on Aromasin now. So I went onto Aromasin. But I had side effects from all of those. I had the most ridiculous things, carpal tunnel syndrome, which people think is repetitive strain injury. And I stopped working. I couldn’t use a computer. And then discovered that was a side effect of one of the drugs I was on. And had injections and that cleared up.
 
Then I went to see, I had problems with my heart and I went to see a very eminent specialist Mr [doctor’s name], and he said, “Oh you need a seven hour heart operation.” And I said, “Is this due to my cancer drugs?” “Oh no,” he said, but about six months later I had some research information from John Hopkins in America, and also from Dana Farber, two of the world’s top research places, and they both said anybody on those drugs, twenty five percent of us will have heart problems. And I’ve now picked up osteoporosis from the side effects. And I’m having problems at the moment with the drugs that deal with the osteoporosis. 
 
I don’t mind, if I’d been told you’re going to get the side effects I would have fully have accepted it. But that was my choice. But at no time did any of the oncologists tell me, “Oh well these are the possible side effects.” They just tried to brush them off. 
 
Do you know which side effects came with which of the drugs at all or….
 
Well I know that the blindness came with the tamoxifen, and I know the skin lesions came with tamoxifen. But now I can recognise the preliminary signs of skin lesions, where my skin gets incredibly dry and I start itching, as though I’ve got fleas. I know that’s more skin lesions happening and I had that with both Arimidex and Aromasin. But thank goodness for Roche Posay. I just slap on two or three times a day, the products, and that sort of calms my skin down.
 
 

Mary had been very happy taking HRT (hormone replacement therapy) for menopausal symptoms but...

Mary had been very happy taking HRT (hormone replacement therapy) for menopausal symptoms but...

Age at interview: 57
Sex: Female
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 And so I was referred by my GP in London to a specialist, I suppose they are obstetrics and gynaecology people but she was actually a specialist in managing the menopause, and she put me on HRT; which was like a miracle. I mean it was completely rejuvenating. I was still having occasional periods, maybe once every three, two maybe two, three, four months, and it was something called, “Do you want me to mention the name of the drug?” it was called Premique Cycle and I went on to that and it was like being rejuvenated. All that weight I was putting on dropped off, I felt my libido came back, my whole ambition, all that kind of I want to make my work really work. I was running a medical research charity at that time called [name], and it was a very very busy job and a lot of pressure with lots of staff and very hard work. And I felt I was capable of doing it again. It was really marvellous. So my experience of HRT was unfailingly excellent.

 
It was about six years ago when I came to live in [city] and when I was obviously transferred from my old GP to a new GP that she said she was very opposed to women staying on HRT and that I should come off and I’m an obedient woman and didn’t think twice and so I just simply stopped taking it. And it wasn’t until quite a lot later that I discovered that that was completely not the right thing to do and so all of those symptoms that I’d been complaining about previously, the hot flushes, the loss of libido, the lack of concentration, the weight gain, they all came back in such a massive rush I thought I was dying. I mean I thought I was literally on, I just couldn’t believe it. But I did cold turkey and I came through it.
 
Another disadvantage of a very directive approach is that it can undermine confidence in medicine if the patient discovers that doctors disagree. If doctor acknowledges that there is uncertainty about which treatment is best the patient is less likely to be alarmed if they find out that another doctor would have advised them differently.
 

Her doctors were opinionated and disagreed with each other about treatment and bed rest after her...

Her doctors were opinionated and disagreed with each other about treatment and bed rest after her...

Age at interview: 84
Sex: Female
Age at diagnosis: 81
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 Oh they argue. They do, they do. Some wanted to operate, some didn't. Some said this was good. Some, one doctor come along and said “I don't want you to get out of bed at all, now you stay right there and you do not move for twenty four hours”. 

 
Another doctor comes along, “What are you doing lying in bed, I want you walking up and down this ward.” I said, “Well I don't know how I'm going to lie in bed and walk up and down the ward at the same time, it cannot be done doctor. 
 
It can't be done. Doctor so and so told me to lay in bed, you're telling me to get up.” And he marched off, so he probably went and had a row with the doctor that said this before, I don't know what happened. So I compromised and stayed in bed for a while, then I got up for a while, it seemed to work. 
 
The protectively paternalist approach

‘Paternalist’ literally means ‘like a father’ which can sometimes conjure up an image of a stern authority figure but it can also suggest kindness, protection and strength. As noted above, some people appreciate a directive approach in some circumstances. It can be a relief to patients who are unable, or prefer not to, take responsibility for a decision.
 

A sympathetic consultant explained that her unborn baby’s condition was ‘incompatible with life’....

A sympathetic consultant explained that her unborn baby’s condition was ‘incompatible with life’....

Age at interview: 31
Sex: Female
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I think it was just too much to really remember. I was just devastated, but numb I think. I just didn't really know what to say or do. And your whole life falls apart in one sentence from somebody, and it was just awful. But I don't think the full extent of it had hit us by then. 
 
We sat waiting for the consultant and she came in. And she was absolutely great. And she came in and she said, “Hi Mum, hi Dad,” to us. And she was a really nice woman - a bit eccentric but really nice - and she said, “Look, this baby is not very well, the abnormalities we've found with the heart and the limbs,” and she said, “At the moment it doesn't look like. The problems the baby's got are looking like they will be incompatible with life”. That's the words that she used. 
 
And again that was a shock because a hole in the heart is something what you think can be operated on, and short limbs, well, maybe they would grow or they, we did, it wasn't something we were expecting, I don't think, that she just said. So from pretty much the word go we were told that the problems the baby had at 20 weeks were incompatible with life. 
 
Which really, from that moment on I felt I didn't have a problem with making a decision. So that wasn't part of the problem for us. It was, the decision in a way was taken away from us because we were told, “Your baby will not live”. So we didn't have that choice of saying, “Well, we could have a disabled baby or we could have a baby with this problem or the baby would need x amount of operations”. 
 
Pretty much from the word go we were told that the baby was 'incompatible with life', and it would be a case of between the 20 weeks and the full term that the baby wouldn't survive and really it just depended on the timing I think. 
 
 

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

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

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

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

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

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

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

The surgeon told Ann that she was one of the ‘lucky’ ones who could have surgery for her...

The surgeon told Ann that she was one of the ‘lucky’ ones who could have surgery for her...

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

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

A doctor may be able to help someone to make a decision that they do not feel happy with by putting the decision in perspective. Rose’s GP pointed out that if she took HRT for a few years it could help her to deal with a difficult phase in her life and there was no obligation to stay on it long term.
 

Rose’s GP encouraged her to use HRT (hormone replacement therapy) even though she had concerns...

Rose’s GP encouraged her to use HRT (hormone replacement therapy) even though she had concerns...

Age at interview: 50
Sex: Female
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The first time I went I saw a female GP and I think that was quite useful, she put it into perspective for me. I was very afraid that if I went onto HRT I’d be on it for the rest of my life or I’d be on it for 15, 20 years and it’s still to a certain extent an unknown quality and quantity. She said, “You have to deal with the here and now, you have to deal with the 50 mile journey, the busy job, the two children going through their own problems, the husband with M.E.” she said, “Look upon it as a safety plaster to get you through the next two to three years”. She said, “Don’t think upon it that you’ve got to be on it the rest of your life, think upon it as a short term solution to get you through this period in your life”. And I think putting it into perspective like that I was more able then to consider it and give it a go and that’s what I did. And again, after five years, I just thought “Right let’s come off it, let’s see if I can manage” and I have and I am.
 
Did you have any concerns about the HRT, about going on it in terms of risk?
 
Yes I did because obviously it was big in the press at the time, the long term effects of it. I was quite concerned particularly six years ago, the year before I started going through the menopause, I had a lump on my breast removed which turned out to be benign. But having had that removed I was very conscious going onto HRT was I encouraging more lumps to come, would the next one be malignant. It was a big big decision for me to make and I was very anti the HRT for that reason. I think I was really concerned that I might get breast cancer from it. I think that was my biggest concern having had this lump removed. But I just got to the point well it was, I couldn’t have functioned without it and it was, well do I risk breast cancer or do I risk losing my job, my home, my family and everything else. So I felt at the end of the day I didn’t really have a choice to be perfectly honest.
 
 

The medical director at her hospice helped her through a terrible depression by persuading her to...

The medical director at her hospice helped her through a terrible depression by persuading her to...

Age at interview: 41
Sex: Female
Age at diagnosis: 34
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I see the Medical Director at the hospice and he respects my wishes. He is honest with me and patient and as I experience new difficulties we discuss them and decide together how to proceed. He has pulled me through terrible depression by persuading me to take the antidepressant mirtazapine which has really helped me. Before I took it I had no appetite and couldn't sleep which was making me very weak so I'm quite sure they have kept me alive and possibly made my condition stable. I think depression is a far more debilitating illness than MND but unfortunately the two often go hand in hand. I resisted antidepressants for years because I didn't want to become dependent on what I then considered to be happy pills. I would never stop taking them now and believe neurologists should strongly recommend them to patients on diagnosis.
 
I definitely needed more emotional support from the medical profession early on but sadly, probably due to time restraints, none was forthcoming. I paid to see a private hypnotherapist and we worked on positive imagery; it just lulled me into a false sense of security and dented my bank balance. I was desperate for emotional support and felt rejected by everyone that I turned to. The counsellor at my surgery said she couldn't make me feel better but I could cry on her shoulder. I decided to cry on my own shoulder. I come from a traditional Jewish background but received no support from the three rabbis I contacted. The therapist at my hospice was fairly elderly and kept nodding off during our sessions which I quickly gave up. My hospice doctor rescued me mentally by letting me discuss my feelings and giving me advice. I can email him whenever I have a problem or just if I feel anxious or low and he always writes back. Because I can't speak well on the phone this communication is a life saver and I know most doctors wouldn't do the same for me. I believe I'm extremely fortunate to have met him.
 
The supportively directive approach

Examples of an approach that combines support with direction were seen in cases where it was clear that the doctor had little doubt about what the patient should do but still took the time to listen to their concerns and provided reassurance and guidance. 
 

Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty...

Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty...

Age at interview: 45
Sex: Female
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 He is – well he has been on everything but he’s been Strattera, Ritalin. Also they use the Epilim for the epilepsy, they also use some of that for the ADHD because it can control. And now he is on Imipramine which is three tablets taken at night time and basically what the Imipramine does is it helps him concentrate a little bit better but it mainly helps him to sleep and if he doesn’t take them he is awake because that was the other thing, that the first six, seven years, he would be up at three, up at four, up at two in the morning, you know completely wide awake. So you know it was affecting all our sleep patterns.

 
Then having another baby was like the baby waking up every hour and a half plus the child waking up as well, plus my husband having to wake up at 5.30 to go to work. So it was very, very intensive in that respect. We were all very tired. So I felt that although it doesn’t control his behaviour as much as probably I would like to, I think the fact that he is sleeping has got to be better, so that is why with the psychiatrist we are trying to stay on that at the moment, because I think if he has a good night’s sleep then you are able to cope with things better during the day, but I think during the day, he could do with having another one, but it is just the fact that it affects, it has other side effects. It could affect his heart beat, so that is other thing, is that you know you give them medication on one hand, and it helps with certain things but it could aggravate others and one of the things that the medication can aggravate as well is the epilepsy, so you are forever having to juggle this decisions and medication is a very complex subject as well.
 
A lot of parents don’t want to medicate but if you don’t medicate when they get to be teenagers all the problems are a lot worse. So it is a very fine line, it is a very, very difficult one, and one that we feel guilty about as well. Until my psychiatrist said, “Would you feel guilty of giving insulin to a diabetic child?” This medication for the brain is for the chemical reaction in the brain so we mustn’t feel guilty. But you know you are always still borderline with that. So yes…
 
 
 
 

Was at first unhappy about taking opioids in case she needed them for increased pain or terminal...

Was at first unhappy about taking opioids in case she needed them for increased pain or terminal...

Age at interview: 73
Sex: Female
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 When it was first suggested to me that I took opioids, I was not happy because one thinks of a) of addiction and b) of something much worse coming up later on. If you're going to get something that really is painful, like terminal cancer, when you're going to need all the pain relief that you can get, then is it wise to become dependent to some extent on strong pain relief now? What would there be left if it became essential, you know, for pain relief in a real terminal illness?

 
My GP talked to me and said “If you need pain relief, you need pain relief and have the one that's going to work for you and if it came to needing pain relief for something like terminal cancer, then it would not be denied”. They would still find some way of making sure that you had adequate pain relief then. So, I sort of did an about turn I suppose from no I don't want it, to yes I'll give it a try. 
 
So I'm trying it, an increased dose. I'm still not too sure whether it's enough. Today it certainly isn't enough to take the pain away, yesterday it was, see what tomorrow brings.
 
 

Was confused and angry when she heard that the multi-disciplinary team had discussed her case and...

Was confused and angry when she heard that the multi-disciplinary team had discussed her case and...

Age at interview: 51
Sex: Female
Age at diagnosis: 50
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 Anyway, on the Thursday, apparently I was discussed at the multidisciplinary team meeting. And I got a phone call to say, no, you don’t need radiotherapy after all. And that was devastating. I felt like I should be jumping up and down for joy, but instead I felt that I wasn’t getting the treatment I should be having. And that’s when I started getting really emotional.

 
You can’t, you know, well I was emotional and angry; I marched up and down this room. This doesn’t feel right, why, how can you be given three reasons as to why you need radiotherapy, cancer cells were too close to the chest wall, the cancer cells were all high grade, and they also found Paget’s, two lots of cancer as they described it. And now, I haven’t been given any reasons as to why I don’t. Apart from you don’t have radiotherapy for DCIS unless you’ve just had a wide lump excision. If you have a wide lump excision you’d have radiotherapy, but not if you’ve had a mastectomy, the idea is that it’s all gone.
 
And I really didn’t feel very confident at all. I phoned the Breast Cancer Care helpline, spoke to somebody there. She suggested really that I try to find out a little bit more information, that I ask to see the consultant, which I did do, and I got an appointment for the following week.
 
Following on from that I went into see the plastic surgeon. The plastic surgeon had obviously been told by the breast care nurse that I was worried ‘cos I wasn’t having radiotherapy. He bounced in because he’s quite a character and said, “I’m pleased you’re not, don’t need radiotherapy, it would have played havoc with my implant.” Oh like this. And I said, “Well I’m glad somebody’s pleased.” And he said, “Why, what is it about, what is it that worries you?” And I said, “I just feel that I won’t know because the implant is there.” And he said, “No, no, no,” he said, “Your chest wall is now on the top, not underneath the implant” he said. “Because your chest wall, the muscle was lifted to put the implant underneath, it’s your chest wall that’s holding the implant.” So this bit here is chest wall, muscle, my chest muscle. So the breast is sat on top of this bit. So he said it’s now on the top. So he said if there was any hint of anything that was left behind, you would get a local reaction. And that’s when I felt more confident. I walked away and I said, “Now I’m happier.”
 
This approach sometimes includes a doctor being willing say what they themselves would do (or had done) in similar circumstances. A man with prostate cancer was given three treatment options by the surgeon and made his decision after asking the surgeon what he would do himself. There were also several examples of doctors using this approach in helping parents to make their decision about childhood immunisation.
 

A woman whose child had been under the care of a paediatrician trusted his unhesitating advice to...

A woman whose child had been under the care of a paediatrician trusted his unhesitating advice to...

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He was someone, I, with [my son] being premature I saw a consultant, when he first came out of hospital, every two months, then every four months, then every six months. So a doctor that had worked with [my son] in hospital, so someone that knew me and knew [my son]. And I knew he had kids. And he didn't think twice in saying, “Get it done”.
 
Did you ask him if he'd done that with his own children?
 
Yes, yes.
 
Did that make a difference?
 
It made a difference to me. I just talked to not lots of doctors, but I just thought, “He's a really smart guy” you know. I mean he's a consultant for premature babies, he's so smart. I just don't believe in my heart that doctors would give you that information if for one minute they thought it would cause a problem. And I do believe that. I mean he's a very smart guy. And I think if he believed that maybe there are problems he would just say, “It's your choice. I can't say”. But he did actually really promote it and said, “It's really important that he gets it”. I mean it was still ultimately my choice, but I felt like he, you know, he's a smart guy, he works in the field, he works with babies all the time and I'm sure he sees the problems of not immunising children.
 
 

His doctor discussed his results with him and gave him a firm steer towards having a prostatectomy.

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His doctor discussed his results with him and gave him a firm steer towards having a prostatectomy.

Age at interview: 72
Sex: Male
Age at diagnosis: 66
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