There are various reasons why people may wish to share decision making with health professionals when agreeing on choices about their treatment, care and lifestyle. By being involved in the process, they may hope to achieve a treatment plan which is most in keeping with their needs and priorities. People may choose not to be involved, and to leave some (or all) decisions to health care professionals. However if people do not feel they have been involved when they would have wanted to, they may feel less in control and may regret the decisions made.
Reassurance and feeling informed
Discussing their options and preferences with health professionals enables people to understand their choices and feel they had made a decision which is right for them.
The treatment options were all explained. She was given information and an opportunity to talk to other people about methotrexate.
The treatment options were all explained. She was given information and an opportunity to talk to other people about methotrexate.
Age at interview: 45
Sex: Female
Age at diagnosis: 39
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Have you felt that in the past you've had a choice in what you've been prescribed?
Very much so. With the exception of my first experience at my local hospital when I lived in another part of the country. But since then I have always felt that my, my concerns regarding treatment were taken fully into consideration and there were options. It wasn't, 'Well take this,' you know. The choice wasn't you can take it or not take it. The choice was, 'Well if you're, why aren't you comfortable, can we talk about it? I think it's the best treatment but if you really don't want to take there is X, Y and Z.' So there were always been options for me. And I think that's quite comforting.
And, and you've felt you were given enough information to make a decision on?
Yes. Yes. Like, going back to the methotrexate, I was given a month cooling off before it was even agreed. There was absolutely no pressure for me to go onto second line drugs without me having had a chance to see all the information and talk to other people. I'm probably luckier than most people because of the work I do I've got people that I know are taking these drugs and I know there's a big pool of support.
The same with surgery, if I did go down that route, I've got people that I can talk to that have had the surgery that's been suggested so, yeah, there are, you know, there are options.
When people want to be involved it does not necessarily mean that they do not value the expert opinion of their clinical team. Health professionals are often seen as a reliable source of advice when decisions have to be made. When people share the decision with a professional they may feel more at ease with their decisions and feel confident they have made the ‘right’ choices.
Contrasts the collaborative approach of his HIV consultant with the 'I prescribe/you take' approach of an oncologist.
Contrasts the collaborative approach of his HIV consultant with the 'I prescribe/you take' approach of an oncologist.
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.
A mother was unsure whether to give her daughter the MMR vaccination, but after speaking to her GP she felt reassured that she had made the right decision.
A mother was unsure whether to give her daughter the MMR vaccination, but after speaking to her GP she felt reassured that she had made the right decision.
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And then our little boy was born and I had the same reservations but again went straight back to this lady at Great Ormond Street. She reiterated everything she'd said before and also I was interested in finding out if there was any more data, has anything happened because there's 3 ½ years difference between the two. And she was just able to tell me exactly what the, the current sort of comment was on it and stuff and, and also it wasn't just her giving me the facts, she was also talking to me as a mother as well. She's got children of her own and she was talking to me from that perspective. So I kind of felt, unlike with our local doctor who I, you know, other people were commenting, “Oh they will just give you the party line,” I felt as if she was telling me exactly what all the facts were as well as the fact she was a mother and she was also being honest with me about how she felt about it.
But I think I really needed to hear the way that this lady spoke, it was very much a case of, you know, her comments seemed to be along the lines of that, you could give one child a ham sandwich and they'll be perfectly fine, you can another child a ham sandwich and they might have reaction to that. So there's always going to be this possibility that a small percentage of children might have a reaction, but like they might do to anything you might cook for them or something. But, that over-ridingly it's safe.
And she was, you know, very sort of from a sort of top overview telling me about the information that's coming from the States and various other countries and how many countries are actually using the MMR and how many years they've been using the MMR and that, you know, there is not a link, that, you know, and I think I needed to hear someone in her position saying, “There is not a link between the MMR and autism.” And, so I think that's, like I say, and I think it was having that initial conversation where she said that, that really kind of tipped me over to think, “Yeah, OK, I think we're going to go with doing this.”
Health professionals are sometimes willing to tell their patients what they would do faced with similar dilemmas. This can be seen as a piece of information which forms part of the picture, rather than an indication that they should do the same. Knowing what the health professional would choose, and why, can help patients feel reassured with the choices they make.
After being advised of three possible opinions to treat prostate cancer, this man asked the surgeon outright what they would do in the same situation.
After being advised of three possible opinions to treat prostate cancer, this man asked the surgeon outright what they would do in the same situation.
Age at interview: 75
Sex: Male
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The surgeon sat me down and he gave me all the various opportunities, one was the radiology and he said that was no good because they didn't know where it was and we then, I agreed with him. I said 'Well what would you have done?'
Well what were the other options?
Well there were only
You mentioned the orchidectomy.
Yes there were only three really, one was radiology and the other was, two operations one that I had was the bilateral orchidectomy, whatever it's called, I can't remember what the third operation was but it was a bigger actually.
Right.
And he explained to me everything and I decided, I said 'Well what would you have?' and he said 'Well do this,' and I agreed. And I went in for an operation on 29th November.
So you had the surgery, even though you weren't really sure that you had cancer?
Yes, yes I took that advice.
Mm because your surgeon said he thought you probably did?
Yes he thought I probably did have it and I couldn't argue.
Tailoring treatment choices to the individual
People have unique experiences, beliefs, and priorities. Sharing decisions allows health professionals to take these experiences into account. Individuals also have knowledge of themselves apart from their “illness.” When people have a long term condition which they have gained expertise in managing, they have knowledge about the illness and how it affects them including the impact of treatments and side effects. Sharing decisions allows health professionals to take all of this knowledge and experience into account.
Even though taking riluzole might have extended her life with motor neurone disease, she preferred to avoid the side effect of feeling sick.
Even though taking riluzole might have extended her life with motor neurone disease, she preferred to avoid the side effect of feeling sick.
Age at interview: 76
Sex: Female
Age at diagnosis: 75
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There is a paper by NICE [National Institute for Health and Clinical Excellence] on Rilutek, and there is a lot mentioned in that French paper about Rilutek and they say it is very good in France. But my GP sent me the printout from the NICE and we looked at it all very carefully and I have decided - and my brother agrees with me, he is a retired GP - that one of side effects is nausea. Now I started off very soon after the diagnosis with really nasty nausea and I felt horrid, and I've got rid of it now. I think it was psychosomatic but I am sure that if I started taking it - and also looking at the advantages of Rilutek, it didn't seem to postpone - what it did, it postponed insertion of a breathing aid by two or four months. Well, Carol [interviewer], I am 76. If I am lucky I will live to just over 80 and then I really don't want to postpone things. I have done a living will and I certainly want to die as easily and as quickly as I can and not be a menace to my family.
Footnote' The National Institute for Health and Clinical Excellence (NICE) guidance on riluzole is at'
www.nice.org.uk
Due to weight loss this woman with motor neurone disease was advised to have a PEG feeding tube fitted. However when she explained that she was a thin person anyway it was decided against.
Due to weight loss this woman with motor neurone disease was advised to have a PEG feeding tube fitted. However when she explained that she was a thin person anyway it was decided against.
Age at interview: 59
Sex: Female
Age at diagnosis: 56
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So I was referred to the local hospital to see the speech therapist and the occupational therapist. The speech therapist and the rehabilitation consultant were talking about me having a PEG because of my weight loss. I felt very strongly that I didn't want a PEG at this time, and fortunately my MND consultant agreed with me. I think I've been proven right, because three years later I've still not lost any more weight. So that was a good thing. And again the speech therapist, I can contact her when and if I need help.
Is there any way the doctors or any of the nurses communicated to you, have there been any good examples or any not so good examples?
I suppose good examples are people saying, you know, “We're here to help you in the way that you need”. I've appreciated that more than the example of, “Well, you're a very thin person. Therefore I think you need a PEG”. And that was really quite frightening. Because although yes I am a very thin person and that is one of the troubles with MND, I've only lost about a stone from my original weight, and I was a pretty thin person beforehand. So, yes, “Let's, let's work together about finding what solutions you need” as opposed to, “This is what I think you need”. That works better for me. Whether it would work as well for everybody, I don't know. But it certainly works better for me that way, yes.
When his doctor dismissed Eddie's concerns about the bad side effects caused by his medication, he was advised to continue taking it. He was unhappy with the results of this decision.
When his doctor dismissed Eddie's concerns about the bad side effects caused by his medication, he was advised to continue taking it. He was unhappy with the results of this decision.
Age at interview: 83
Sex: Male
Age at diagnosis: 80
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I can’t remember exactly when the walking became affected. The doctor at the hospital was conscious of the fact that my walking wasn’t as good as it should be and he noticed it more than I did to start with. And the effect of the Sinemet plus, I think it was, the effect of that was it improved my walking and also my hand wasn’t shaking so much, so it was being effective. So in the first time it didn’t consciously affect my breathing but he wanted he wanted to increase the dosage because he didn’t think the dosage was strong enough to do the job properly so I had to take an extra tablet, sixty two point five. And when I started taking that that’s when I started suffering from the breathing problem.
Can you describe the breathing problem?
Yes, I would wake up in the night and you breathe through your nose normally and I reached the situation where breathing through my nose was very difficult and the worst thing I could do was sneeze because it increases the blood pressure and so I got the feeling with my nose being blocked up and the effect the effect was very unpleasant.
And so what was the next thing you do you did? You told I think you told me you went back to the doctor.
I stopped taking the Sinemet and.
Had the doctor told you that it was definitely caused by the Sinemet?
I had a after I went back to the hospital, the second appointment, but he didn’t seem too concerned about the breathing effect he was more concerned about the effect by not taking the Sinemet and doing harm to myself and so he suggested I should go back and have a second try. So I thought, “Well, with respect to the medical profession the doctor I’m prepared to do that.” So I went back and I had and I had a second go but the effect was worse than the first time so I wrote a letter to the local doctor saying that I was I wasn’t prepared to put up with horrific breathing problems. I would rather put up with the problem with my hand shaking than the breathing so he wrote me a letter back saying that he respected my viewpoint which I which I had a right to choose for myself.
Advises people to tell their GP about any side effects, which she emphasises, can vary from person to person.
Advises people to tell their GP about any side effects, which she emphasises, can vary from person to person.
Age at interview: 50
Sex: Female
Age at diagnosis: 45
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So it was like a continuation of everything. So you've got to be very careful, you've got to know your doctor, you've got to be very frank with your doctor and say to him look this is what's happening with this tablet. They've heard it all before, they're not going to hear anything that's going to shock them, so it's a case of if you're honest with your doctor and say “Look this is nae, this really this isn't working, is there anything else you can suggest”.
As long as you've got a good rapport with your doctor you can sit and talk about any tablet you're going to be put on, he will give you the most major side effects that goes with it, and you can discuss it with him, if it’s going to be beneficial to you and is there another tablet that doesn't give you so many side effects, if there is would it be because you're on some other tablet, would it be counteractive to that tablet.
So as I say a good relationship with your doctor you need to have, you need to discuss it with him or her, and say “Look what is the best thing for me”. You've got to be willing to try different tablets. I mean even if the doctor says to you these tablets side effects are horrific, it might not be the side effects that you get, because every person is different.
So it means that you're not getting the same side effects as somebody else is getting on the same tablet, so as I say it’s your body, it's the chemicals or whatever the makeup of your body, it’s how that deals with any foreign substances that you put in it. And you have to actually be aware and be able to turn round and say to the doctor ok I'll try it but if it doesn't work I'll come back.
A woman with chronic pain advises others to do research and be prepared to be involved in decision making.
Asserts that patients should take an active role in making treatment decisions.
Asserts that patients should take an active role in making treatment decisions.
Age at interview: 53
Sex: Female
Age at diagnosis: 30
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In those days people were given large doses of steroids long term routinely and I knew that's what I didn't want. So I refused steroids and I'm, on reflection I'm very glad that I did because now I don't have all the problems that are associated with people taking steroids over long periods. But I've found over the years that the patient actually has to take an active role in the process of their disease.
You cannot afford to assume that all the health professionals know exactly what they are doing. They may think they know what they are doing but you can ask two different health professionals and you can get a different answer can't you? So I think in a way it's, it's helped me, that I've been a bit of an exceptional kind of patient, I'm not the kind of patient who'll just take whatever I'm given without questioning it. I come from a family of medical people and I want to know what the drugs are, I want to know what the side effects are. So I knew instinctively I didn't want to take steroids.
Taking account of individual preferences
There are many aspects of people’s lives that doctors will not know about. These include how people balance length of life and quality of life, avoidance of specific effects of medicines, their views of invasive interventions and their moral views. For example, peoples religious beliefs may influence the healthcare decisions which people make, and doctors cannot know or guess what these will be, without asking or listening.
She would consider ending a pregnancy, even though she comes from a...
She would consider ending a pregnancy, even though she comes from a...
Age at interview: 36
Sex: Female
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I was just going to ask about your daughter - you, you mentioned that your first thought was that you would go for adoption?
Yes.
Did it ever cross your mind in that case to end the pregnancy, or was that not an option for you?
That wasn't an option for me, because I was far gone in the pregnancy at that point.
If it'd been earlier, was that something you might have considered?
Yeah, if it had been earlier, I would have had an abortion.
For some people, kind of religion plays a part in their decision making. I don't know if that's the case for you. What kind of factors were you thinking about in thinking about abortion and adoption, whether to continue?
Well, religion or no religion - well, I've come from a very religious background. My granddad is a Reverend - well, a Reverend headmaster. My Dad is an educationalist as well, he's a teacher. So, but sometimes I think you just have to be very practical about things. I want to be a realist, I want to be very realistic about things. I think every child deserves a right to life, but I also think every child deserves a right to a good life as well. A fulfilled life. At least health is one thing you cannot buy, and if a child wouldn't have a good quality, life quality, why would I bring that child into the world? So I'd rather not put my child through that and have an abortion, have an abortion instead.
She explains the teaching of some Islamic scholars about the possibility of ending a pregnancy before the soul enters the unborn baby. (Read by an actor.)
She explains the teaching of some Islamic scholars about the possibility of ending a pregnancy before the soul enters the unborn baby. (Read by an actor.)
Age at interview: 31
Sex: Female
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Video and audio clips read by an actor, translated from Mirpuri.
Allah forbid, if this was to happen to you again, if you're twenty weeks pregnant and you find out late, what would you do?
I have not thought out that I wouldn't let it go so far. If it does, I mean I have enough children, but even if it does happen, I think that would be too late. Because Muslims are not permitted, because the child has a life then [soul has entered]. The baby moves in the mother's tummy at about four, four and a half months. And in my calculations, I don't think anyone should do that. Don't let it go to that limit anyway. Eleven weeks is really nothing at all, I mean, it's just blood, doesn't have a life. The baby doesn't move in the mother's tummy. A baby of four, four and a half months moves its arms and legs. The mother can feel it. That's too late.
You said that it's not permitted in Islam. Did you get any information from anywhere about Islam?
Yes.
How?
The individuals are educated. They said that it is not a sin within eleven weeks.
Where did you find out from?
We found out, I mean, they're educated people. Now they talk about it on Radio Ramadan, I sometimes contact them, ask them. The Molvies [priests] sit on Radio Ramadan when it opens and they said that Mashallah it doesn't say in any book. Yes, if it's more than this many weeks, then it is not permitted. But it is no sin at this many weeks.
More than how many weeks?
They said over three months or over four months, but it's not a sin under three months or up to three months. It's no sin, I mean, it's not alive. The soul enters at about four months.
Footnote' some Islamic scholars teach that termination for life-threatening conditions is permitted up to 120 days of pregnancy, at which point the soul enters the unborn baby ['ensoulment']. After that it is forbidden.
They have drawn strength from their Islamic faith in caring for their son during his bone marrow transplant. They believe medical innovation is God-given. (Video in Sylheti.)
They have drawn strength from their Islamic faith in caring for their son during his bone marrow transplant. They believe medical innovation is God-given. (Video in Sylheti.)
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English translation, video and audio clips in Sylheti.
How else can we help families, what can we do to help families like yourselves?
Mother' To give us hope and faith.
What advice would you give them?
Father' Although we don't really have the skills to give advice, we would say that within your family, if you do suffer from such illnesses, then you should uptake the recent developments and advances with medicine. Always keeping faith with Allah's powers, I would say to try what the doctors are offering, perhaps it will be successful. With full faith in Allah. Allah has said to benefit from medical advances. We don't know how the illness will progress, for that reason; it is important to inspect any new inventions or advances in the medical profession that may return the patient to good health. I also feel that although the treatment processes such as carrying the bag, the injections, with older children it can be difficult; I have seen it benefiting my son. You have seen too. Allah has blessed my son. The rest is up to Allah. I would also hope that other families place their full faith in Allah. If their son and daughters are patients, then to take the advice of medical professionals
They need to be brave?
Father' Yes, keep your mind strong.
Isn't it stressful staying in a hospital? Going there and coming back takes a toll.
Father' That's right, but whatever befalls you, you have to confront it and go forward, you can't keep looking backwards that's not going to work, you have to advance. My wife has said 8-9 years, I wasn't here, without me.
As a Muslim, she feels screening can be useful, but termination is absolutely forbidden. You should accept your fate and pray. (Read by an actor.)
As a Muslim, she feels screening can be useful, but termination is absolutely forbidden. You should accept your fate and pray. (Read by an actor.)
Age at interview: 20
Sex: Female
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Video and audio clips read by an actor, translated from Urdu.
I think if you could miscarry, if there is a danger to the child, then I should not have the test. I should have the testing done after birth. If there is a concern about the child dying or a miscarriage, then this is the greatest sin, is the formed child is miscarried. We consider it a great sin.
Right, I mean if you find out that this child would have this condition, in which he would have to have blood and could die in childhood, do you think that such a child should be terminated or not.
If you find out, we cannot terminate. It's the greatest sin, and God forbid, if it is born dead, then there is nothing that you can do. If it is born well, then you could have his blood tested and tell the doctor that he has this problem, and they themselves can think and say what should or shouldn't be done.
I wanted to know that why you had your husband tested. Why did you want to have it done?
This was for my own reassurance. God forbid if he had thalassaemia as well, and if I had it, then there would have been a problem for the child because of us both. There would have been a problem, like as the child gets older and older, and in the end he dies, then that's because of us. We should both have our blood and urine tested, and then we should think whether we want children or not.
Right. But I don't quite understand here, that you said that you had him tested, right, for your reassurance, but at some stage, you must have thought about what you would do if he also had thalassaemia?
What would I do? I would just pray to Allah. What else could we do? And whatever is written in our fate will happen.
Footnote' Screening for sickle cell and beta thalassaemia is performed using blood samples. Urine samples taken during pregnancy are to check other aspects of the health of the mother and baby.
For them pre-implantation genetic diagnosis is compatible with their Christian beliefs, though the Catholic Church might not agree. (Read by actors.)
For them pre-implantation genetic diagnosis is compatible with their Christian beliefs, though the Catholic Church might not agree. (Read by actors.)
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Video and audio clips read by actors.
Man' I just feel for me like I feel for other people. I do leave the individual to deal with all these issues. And if I'm against abortion, or I don't want to proceed, it's very personal and it's my choice. And even if I disagree, I entirely respect someone else that wants to go down other avenues. And what I strongly feel about it is that that should be available for everybody… Because I might be a believer, someone else may not be… I mean I'm firmly in favour of rules or procedures, very strict rules and procedures which have to regulate all this area… But, on this particular case, then I leave it to the individual. It's your conscience that decides.
And in moral and religious terms for you the pre-implantation diagnosis is much more acceptable?
Man' Yes, but I mean not only for me morally but also physically. I think that there is quite a substantial difference if you are actually conceiving, you have conceived and you are going through the abortion without knowing - or you have tried to your best to avoid that possibility. I mean, here they advise that if you are pregnant you don't have to smoke, but no one tells you if you're getting pregnant and you know when you get a disease, to do everything you can to prevent it, in a very easy manner. So you take all the precautions. You're only doing it because first of all you want to protect and preserve the life, even, of who is the future being, of your offspring, and just like any other parent in any respect. So when I'm doing this procedure, I feel like I'm doing exactly the same. I'm trying my best not to smoke, not to do all these things that potentially we know could be harmful to the child.
Woman' And the same rule applies, not only for thalassaemia, if you have a condition and the only hope to save the child is bone marrow transplantation, or a number of operations which can be done can be improved by having a sibling or by being pregnant. And the general feeling is that somehow the church does not allow this. Because although you try the very best to save your child, why can't you try? If you can have any possible operation or replacement of an organ or whatever, to make one life better, why can't you do it with the help of for example a sibling, or with the help of technology? But not because you're worried about aesthetics. Because you're concerned about the health, because you want to try and give the best start in life for the child… And this is of course one of the questions which you just ask yourself over and over again. And that's why you do ask yourself, why is PIGD a better solution than just trying for it and then it may go well or it may not, and then you take the consequences, or you decide on the consequences, you decide on what you want to do. And in spite of being a practising Christian, and the church disagreeing with these decisions, that doesn't make me un-Christian, in the sense that just because I think I've got this belief, I hope it doesn't make me a bad person.
And I just hope that I do it for the right reason and not because I've got great aspirations for the child. So that's the reason why. One friend of mine, actually, did ask me - I think it was when, after the negative result of the PIGD - she did ask me why would I go through this procedure when I would have to do an amniocentesis anyway, and if the test, if the diagnosis proved to be wrong and I was carrying an unhealthy child, I may have to choose the abortion, why would I not just try to get pregnant and then make that decision? Which, maybe in theory, is a very good option in certain respects, but maybe because of my Christianity, because of my religion, I don’t want to have to decide whether I want to have an abortion or not, because that would be a really difficult decision.
Patients whose preferences were acknowledged described satisfaction with the treatment decision. The following two women describe different experiences when discussing their HRT, and different satisfaction with the result of this.
Jane has weighed up the risks and prefers to take HRT for her menopausal symptoms to protect herself from osteoporosis and bowel cancer.
Jane has weighed up the risks and prefers to take HRT for her menopausal symptoms to protect herself from osteoporosis and bowel cancer.
Age at interview: 64
Sex: Female
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Well, I suppose I started thinking about the menopause when I was in my forties because I read about it and HRT hit the headlines and at that stage, HRT was said to be wonderful and there didn’t seem to be any disadvantages. HRT was said to reduce osteoporosis, reduce cardiac troubles in those days. There was nothing negative about it so I think when I got to the age of about 50 and started to have just the odd hot flush my reaction was immediately to go on to HRT, partly because my mother had osteoporosis and other members of the family had had osteoporosis and I dreaded getting osteoporosis and I felt it was the right thing to do. I think I started, it’s quite a long time ago now so I think I started on some tablets and then I tried patches but the patches gave me some skin reactions so I went back to tablets. And there was no problem at all. I never had any side effects. I just felt great.
Then of course the headlines changed a little bit. There was more research on HRT, people started to talk about dangers of increased risk of breast cancer, dangers of increased risk of cardio-vascular problems. So I started looking at the literature and read articles in the BMJ [British Medical Journal] and the Lancet, the British Journal of General Practice, the newspapers, everything I could find. And it seemed to me that the dangers and the risks of HRT had been exaggerated in that people didn’t understand risk.
And for me, the advantages outweigh the disadvantages because I dread getting osteoporosis. The risk of osteoporosis is reduced, also I think the risk of bowel cancer is reduced when you’re taking HRT and the quality of life, for me, has been terrific on HRT so I’m carrying on still taking it.
What is your doctor’s attitude to you being on it for so long?
She’s terrific. She knows I look at the literature and have done the research and understand the risks and in fact I went to see her yesterday partly because I knew this interview was coming up. I thought I’d have a discussion about it since I’ve been on it for about 15 years now, and she agreed with me that the extra risk for breast cancer is actually quite small. And she said that you have a similar extra risk if you’re overweight. So we discussed the other reasons for having extra risk of having breast cancer and she was perfectly happy for me to go on with it.
Janice felt her GP did not understand her reasons for wanting to stay on HRT and believed her own opinions should have been acknowledged more.
Janice felt her GP did not understand her reasons for wanting to stay on HRT and believed her own opinions should have been acknowledged more.
Age at interview: 59
Sex: Female
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I liked being on it actually. It seemed to give me some kind of energy boost and it sharpened my memory. So I felt better on HRT. Anyway, all this story took about five years to come round. I went down to the GP. It was a female doctor who said, “Oh, you’ve been on it for five years I’m not going to give you another prescription for it.” And I said, “But I want to be on it.” She says, “Yes, but there’s research coming out what’s showing there’s a higher risk of breast cancer.” And I did say, “Well, I don’t smoke. I don’t drink a lot, maybe half a glass of lager or something a night, maybe five nights, four nights, nothing heavy. Could I stay on it?” But the doctor was adamant I couldn’t continue on that.
So I was brought off HRT and I found after that oh, it were terrible, absolutely. I were weepy. I were feeling depressed well, I’ve had depressed days. I just imagined this must be what depression feels like. I just couldn’t remember things. I were dull. I needed a sharp memory, a clearer memory in my job and it were terrible. So I went back to the GP and it were a male GP I got this time and I just begged, “Could I have HRT please?” And he said, “Well, we’d rather not.” And I said, “Well, I’ve got all the pressures from being a carer. I’m getting really weepy. I’m driving along the road and I just want to cry.” And he prescribed me some red clover and I tried that for about three months but it made no impact whatsoever.
So I just felt, this is it then. I’ve had my five years worth or whatever they consider you can have and I were just devastated. And I just think it was I’ve had my choice taken away from me. I wanted to stay on it. I felt better much better on it and I just couldn’t understand why somebody else had made that choice for me. They weren’t in my body and they weren’t living my life but yet a decision were made to sort of deny me a therapy which I found beneficial. And I did get the feeling somewhere along the line that it were viewed as women trying to clutch on to youth and really we should go into older age more gracefully, not need pharmacological, crutches or interventions. It were, “So get on with it”. And I’ve never been back since although I bet once a week at least I think, “Oh, I wish I could have my HRT.”
Is there a reason why you wouldn’t shop around and go elsewhere?
I would say in [city] there’s a culture of you stay with the same GP unless you move. I would say in [city] not many people do shop around, it’s often, “Oh, better the devil.” And then you hear shock, horror stories of other GPs and you think, “I’d better stop with mine.”
Patients may be involved in finding out about new treatments becoming available, and then be supported in accessing these.
Suggesting a sentinel node biopsy allowed this woman to avoid a lymph gland operation for breast cancer.
Suggesting a sentinel node biopsy allowed this woman to avoid a lymph gland operation for breast cancer.
Age at interview: 56
Sex: Female
Age at diagnosis: 54
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It's an organisation called Can Help and they have a website.
He did a report for me that told me about something called sentinel node biopsy, which was a way of avoiding the very serious lymph gland operation. They simply inject a radioactive dye into the tumour and then they track it with a radio isotope. And this is quite painless. It's just watching something on a screen. And there's a dye injected which wasn't nearly as painful as the fine needle biopsy. And if the radioactive dye drains out, it will go to the first lymph gland, that's called the sentinel node.
And then the next day when I had my surgery they - with a little Geiger counter - they go straight to this lymph gland and they do a cytology, then and there, in the operating theatre. And if it's negative there's no way it can have spread to the rest of your glands, and that avoids major surgery.
I persuaded him, because it was part of a trial, that I didn't want to have the lymph glands removed after and he agreed because he considered I was sufficiently well informed.
And I think it's so important not to be bamboozled by doctors into the first set of solutions, they panic you into having major surgery that perhaps isn't right for you.
A man with prostate cancer found out about a new treatment in the newspaper. His GP helped him to access the treatment under the NHS
A man with prostate cancer found out about a new treatment in the newspaper. His GP helped him to access the treatment under the NHS
Age at interview: 72
Sex: Male
Age at diagnosis: 70
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I must admit when I read the results from the Internet, cryotherapy struck me as being useful rather like Brachytherapy but they're using a very, very cold Argon gas that freezes the prostate to death.
I spoke about all the various possibilities with the consultant, and he said cryotherapy is not available in England. So I said 'In that case let's go for Brachytherapy,' which I understood then was available in Leeds and in London. And he went off to refer me for Brachytherapy. Literally the next day I saw in the Telegraph that Mr X down in X Town was in fact going to start up with Cryotherapy and I went back to see the consultant, and said 'Oi what about this?' and he read the article, took a photocopy of it and promptly referred me.
And I put this to my GP and he said 'Yes you're absolutely right but at the present time we have to put certain treatments out to tender and cancers are covered for our particular practice by [Hospital] so if you like your treatment has already been paid for in advance and that's somewhat different to having to come up with the cash to pay for your treatment now. But he said 'Leave it with me,' and a month later he came back and said 'It's fixed.' So I was very lucky and I was treated under the National Health.
I went down to the operating theatre somewhere about 10, 11 in the morning I was given a general anaesthetic and the next thing that I remember I was in bed and it was 4 o clock in the afternoon and everything had gone well.
After the cryosurgery I was a bit battered and bruised down below. One of the things Mr X had to guard against is that whilst he was happy, willing and raring to freeze my prostate to death, once that had happened it would be absorbed into the body, there were certain parts that he didn't want to freeze and so warm saline solution was pumped in and out of those parts to keep them warmed up. But I was pretty badly bruised and swelling and all the rest of it and he decided that he should give those working parts a bit of a rest and I had a secondary plumbing system inserted just about the navel, and I wore a bag for about a month. That was inconvenient.
This is for urine?
That's for urine yes, that was for urine. It was inconvenient but certainly the month I had the bag all the bruising went and the stitches were removed and the bag was eventually removed and I've had no urinary problems since.
And what about sexually because that's another thing a lot of men worry about, particularly with the other forms of treatment where you can have problems with erections and things like that?
Well yeah I have had a problem there but I was warned that that might be the case and might last for a year or so and yeah I still have a problem there. If I was 30 it might be a greater problem but I'm not.
I would say that at no time prior to or after my treatment have I ever had any pain or any reactions to the treatment whatsoever.
Patients were sometimes aware that they were being asked to share in a decision because there was little research evidence about what the outcomes of treatment might be, or when there was media controversy surrounding the issue.
After discovering a genetic predisposition which meant she had a higher than average chance of getting breast cancer, Karin was certain she wanted a mastectomy.
After discovering a genetic predisposition which meant she had a higher than average chance of getting breast cancer, Karin was certain she wanted a mastectomy.
Age at interview: 39
Sex: Female
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I didn’t have the 90% figure when I got my results. I had a, I think we were up to about 70 at that point. But even with that, there was no question [name] was three and a half at the time, yes, she was about three. So I didn’t have a choice because I was 35 or 36 and I had a baby.
So you had no choice other than to have the mastectomy?
Well, I felt I had no choice. Everyone makes their own decision but for me, I had to do some, if I had an opportunity to do something, I didn’t want to actually ever run the risk of regretting it because I didn’t want to do it, or I’d do it in a few years time, or finding an excuse. I wanted to actually deal with it, and deal with it now. So after my genetics appointment they made me an appointment with the breast surgeon.
I went to see him, he was very nice, we started discussing what form of surgery we’d go for, and he said, “Well you need to do plast… see plastics, because I opted for a bilateral DIEP, which is basically moving the tissue from the stomach to the breast. And it’s more a plastics job than a breast job.
I don’t know whether I would, it would always be a concern. If I wouldn’t have been genetically screened, it would always be a question, because of my family history. If I’d been genetically screened and not done, not had surgery, I think I’d be very anxious, I’d be a very different person. Because one’s breasts change and you feel things, and, I mean even now I know, I know what my breast feels like, but it’s different to the way it used to feel, and you feel different things. And you would just always wonder. Yes, is this lump, is this cyst, is this… whatever and you don’t know. I would do it again tomorrow. I would say, if you’re in doubt, speak to your doctor. Go and get tested, and take it from there, because the support is out there. Because it’s such a specialised thing, the people who support you are knowledgeable and they know what the best thing is for you which may not necessarily be surgery. It may not be the sort of person who can deal with that, and you can deal with having to wake up every day and wonder. Always a sort of a time bomb because you don’t know. It’s like Russian roulette. You don’t know whenever your time’s up.
The choice of having a mastectomy or wide local incision was left to her because research suggests both were of equal benefit when treating breast cancer.
The choice of having a mastectomy or wide local incision was left to her because research suggests both were of equal benefit when treating breast cancer.
Age at interview: 59
Sex: Female
Age at diagnosis: 56
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The other issue was the surgeon, on giving the bad news, said' "Now you have two options' either a mastectomy or a wide local excision." And he said' "It's your choice."
And we went through the reasons for each.
I can't remember very clearly at the moment but I remember I had Christmas, the whole Christmas period, to think about this. And thank goodness for e-mail. I was able to e-mail my specialists where I'd had my previous operation and said, you know, I wanted their opinion.
And again the woman surgeon said some very sensible and sound, gave me some very sound advice, which was she couldn't say categorically which way I should go.
She said experience showed, research showed, that in fact in this particular kind of case mastectomy and wide local excision were of equal benefit.
But, once I had made the decision, not to go back on it, not to think about it. Just forget and move on. You know, make the decision. Which was very, very good advice because it's no good thinking' "My God, have I decided on the right thing?" And that was a lot of help.
When faced with the choice to have a hysterectomy or chemotherapy to treat ovarian cancer doctors were reluctant to direct her in the best treatment. She suspects this was because of the media coverage surrounding the treatment at the time.
When faced with the choice to have a hysterectomy or chemotherapy to treat ovarian cancer doctors were reluctant to direct her in the best treatment. She suspects this was because of the media coverage surrounding the treatment at the time.
Age at interview: 41
Sex: Female
Age at diagnosis: 38
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The hysterectomy, I remember we were in this room with the surgeon and the oncology team and, because all this happened at the time when there was a lot of news reports and cases brought against gynaecologists, and he was saying about "well this is the chemotherapy you need and, you know, you might want to look at a hysterectomy," but it was the way it's put "you might want to look at a hysterectomy." And then, you know, you dig a big deeper "Okay well what's the best way of walking away from this? So if it's going to be awful and sheer hell for a year as a family, how are we going to, how am I going to create the best chances of us walking away from it all?"
And, you know, it's like "Well you don't have to do it but, you know, to have the hysterectomy and to lose the next ovary would probably be the best thing, but the choice is yours." And there was a reluctance to turn round and say it purely because there was all this litigation in the news at the time. And so it's like “okay well I really think the only way round it is to have the hysterectomy” and as soon as I said "Yes we'll have a hysterectomy," they all went “phew”, you know, because it was just so bizarre, you could see the relief, it's like okay well that is the best decision.
Sometimes patients’ choices may seem to clash with what health professionals are expecting or advising. In this case, patient input is needed to achieve the outcome they desire. The following clip describes a woman’s experience of this kind of situation.
She felt rushed into the decision to end her pregnancy (due to a foetal abnormality), but took back some control by deciding to allow the baby to be born alive.
She felt rushed into the decision to end her pregnancy (due to a foetal abnormality), but took back some control by deciding to allow the baby to be born alive.
Age at interview: 31
Sex: Female
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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.
Involvement and control
Being involved in decision making with health professionals was important to some people because they want to keep the sense that they were in control. Being involved in decisions could feel empowering.
Pamela describes how she feels she must be involved in treatment choices, especially as diabetes is a lifelong condition.
Pamela describes how she feels she must be involved in treatment choices, especially as diabetes is a lifelong condition.
Age at interview: 54
Sex: Female
Age at diagnosis: 50
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And is there anything that looking back you feel worked particularly well for you?
My GP letting me take control of it or not control of it… I mean he was… I mean I said to him in January, “I want one last try to get these under control.” And he said, “Okay, but you've said that before.” And I said, “No, I really mean it this time. I will, and then if I don't get it under control, I will start insulin. And you can put that on my card, that I will do that.” And he let me do that, you know, without, and he hasn't sort of, he hasn't pressured me into stuff that I didn't want to do. It's been negotiated. The increase of medication has been negotiated.
The, I mean I said to him about the atenolol, coming off the atenolol when my blood pressure went down. And he said, “Oh, I don't know. Oh, all right then, we'll give it a try.” So he responds to my requests. And if my bloods continue to stay the same, I shall ask if I can take lower doses of the metformin. And I'm sure he'll let me if he thinks that's okay, as long as I monitor it.
So there's a lot of, I think for me I'm glad there's a lot of self-monitoring. And you have to take responsibility for it yourself because it is a lifelong condition - it's a 24-hour condition. You can't just take your medicines in the morning and expect to go through the whole day then just doing what you like.
Having input into the decision whether to go ahead, delay or refuse treatment can be important to people. People who felt they had been excluded, or not fully informed, in the decision making process sometimes regretted what had happened to them or were dissatisfied with the final decision.
She feels that back surgery was the worst decision for her and advises others to educate themselves rather than rely on doctors.
She feels that back surgery was the worst decision for her and advises others to educate themselves rather than rely on doctors.
Age at interview: 56
Sex: Female
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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.
Michelle's skin saving mastectomy was chosen for her and she had little input in this decision. She did not fully understand the consequences and in the future would choose a different procedure.
Michelle's skin saving mastectomy was chosen for her and she had little input in this decision. She did not fully understand the consequences and in the future would choose a different procedure.
Age at interview: 41
Sex: Female
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And are you having the same procedure?
No, no because that was hateful. That was hateful, now if I knew then what I know now, I’d never have had that surgery. It was horrendous.
Why did you choose that procedure in the first place?
I didn’t choose it. It was chosen for me. Based from my surgeon, based on, oh, because I had something called a skin saving, or skin sparing mastectomy which mean that they just took out everything but left my skin. And you can’t put, just put, you could just put an implant in there, right, but I don’t think it would have… and at the time we didn’t know I had BRCA. Although he had feelings, he didn’t share them. So in order to match it up with my other breast, he felt, and everyone else around him agreed, and me, but I was like a lamb to slaughter in those days, didn’t have a clue. I was just in a state of constant drug induced panic. Horrendous. It would be the best way of getting a good shape to match my existing breast and they take like, it’s like an ellipse shape from your muscle of your back. And that is…. I mean it’s incredibly clever … they wrap it round. They sort of thread it round under your arm and make the shape which is amazing. I mean I’ve got a great shape there which I would not have had without it. But it was very, … and looking back I suppose I’m grateful that I’ve got a great shape. But so painful, so painful, and the recovery was not great. And knowing that I had to down the road of chemotherapy, only six weeks later, gloomy, miserable and because they take away this muscle from your back, your body naturally is missing something. So, it fills the hole with fluid every ten days. You have to go to the hospital to get it aspirated. I mean, honestly. I don’t like needles. I’m needle phobic. This hole where they took the muscle from fills with fluid basically, and you have to aspirate it literally every two weeks. For about five months. It hurts. When it’s building up it hurts like you’ve got a leech there, like… I mean grim, grim. So no. However, and I’m not having it this time. No. However, and I’m not having it this time. No because I don’t care.
Last reviewed February 2016
Last updated February 2014
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