Elizabeth - Interview 27

Age at interview: 53

Brief Outline:

Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.

Background:

Elizabeth is a nurse. She is married with 2 grown-up children. Ethnic background/nationality' White British.

More about me...

Elizabeth was diagnosed with early-stage ovarian cancer in 1996. She needed an operation and was told she should also have a course of chemotherapy. While she was still in hospital recovering from surgery, the consultant came to ask if she would take part in a trial. This would have been comparing the current standard chemotherapy course with a new combination of drugs. She was given three weeks to think about it.

 

Elizabeth and her family thought about it, but she felt for a number of reasons she did not want to take part. One reason was that, unlike many women with ovarian cancer, she had been diagnosed at an early stage and therefore felt it was not necessary to have the extra chemotherapy. She also thought that because she was not a typical patient this would affect the validity of the trial results. Another reason was that one of the side effects of the new combination of drugs would have been losing her hair. Both she and her son would have found this very distressing, and she would have felt she had lost her identity. She did think briefly about saying yes, and then seeing which group she was randomised to, thinking she could withdraw if she was allocated to the group getting the combination therapy, but then felt that would not be fair on the staff running the trial.

 

When she went back for her next appointment she therefore told the registrar she had decided not to take part. The registrar was supportive and understanding, but said she had to call in the consultant to tell him. Elizabeth’s memory is that the consultant was quite cross with her about her decision, and implied she was only declining for selfish or trivial reasons, because she was worried about losing her hair. Elizabeth was upset by his reaction and worried that it might affect the quality of care she received because she had refused, although in fact it did not. She still feels not going on the trial was the right decision for her at the time.

 

She feels clinical staff need to show more understanding of how vulnerable patients feel making such a serious decision at a time when they already feel worried and upset by their illness. She thinks it is important staff respect individuals’ reasons for making their own choices. She thinks medical research is important and clinical trials are valuable, but staff must raise it with great sensitivity. Elizabeth also feels more should be done to feed back to patients who have taken part in a trial what the results are in the end, and also to provide them with proper support, in case the results show that the treatment they had was not in fact effective. This is still a valuable research finding, but for an individual who has experienced unpleasant side effects and given up time for a trial, it could be upsetting news. It is better to tell them but with appropriate support than to leave them to find out on their own on the internet.

 

 

If someone had mentioned the trial earlier on it would have been less of a shock when she was...

I think it’s quite difficult to, to put trials in the mix of everything else that’s going on. And I suppose maybe nowadays people are talking more and more about trials, and being involved with them, but actually I think I was a bit shocked that that came in the package as well as dealing with everything else, that you don’t expect that that’s going to come. And maybe if I’d, somebody had said to me “Well, you know, you’re doing very well, you’ve had your surgery, it’s looking fairly good. It may be….” If somebody had partly introduced the idea that there might be the possibility of a trial that might be suitable for you, so that it had been dropped into the equation little by little, it wouldn’t have been quite such a shock when suddenly the first appointment you have with the oncologist is, you know, “Are you going to take part in this trial?”

 

Whereas you hadn’t thought about it before. You’d thought, “Well, it looks like probably I’m going to have some chemotherapy”, but I hadn’t really thought about the fact that you’re going to have to make decisions, and I think it’s very difficult to make decisions at those points. And maybe if somebody had said at the beginning “Well, you know, you may need to discuss or may need to think about whether it’s appropriate that you take part in a trial.”

 

So at what stage might they have done that, do you think?

 

Well, somewhere between having the operation and seeing the oncologist, I think, you know. Maybe the Macmillan nurse could have come round and said, “Well, look this is what’s happening.” I think it’s just keeping people, tabs on people so that they are in the loop of what, what’s likely to happen. But suddenly to come out with, you know, “You’re going to get, you know, there’s this trial you’ve got to make a decision about.”

 

Okay, anything else?

 

I’m just worried I’ve said too much, really, [laughs] that I’ve gone and blown everything and told everybody that trials are rubbish, whereas I don’t think they are, because I think, you know, there needs to be trials. But I think they need a bit of thought of how, how it’s handled and how it’s introduced to people at a very vulnerable time. I think that’s probably the major message I would say, you know. However much they want to include people in trials, however much they want people to take part in trials, they have to appreciate that people are going through life-changing or adaptations, and it can be very difficult to take these things on board, however urgent it is to make that decision. It is difficult to get your head round all sorts of decisions that have to be made at that stage, when you’re taking on board all sorts of life-changing facts. So I think that would be fair to say, [laughs] that, you know, at the end of the day you do need trials, but actually it needs to be handled quite sensitively at a difficult time in somebody’s life.

When she told the consultant her decision, he seemed angry, which made her feel vulnerable and...

So I went back in three weeks time. I was very, very nervous because we’d all come to a decision that it really, I didn’t feel it was appropriate for me to go on the trial. And they were – well, the consultant was quite cross with me that I’d decided not to go on the trial. The registrar I was seeing was very supportive, understood completely why I’d chosen not to go on the trial but [pause] the consultant was cross and said it was only because I was didn’t want to lose my hair, couldn’t understand why I didn’t want to take part, and I felt very, very vulnerable and very upset.

 

And it made me think that there was another side to trials, that maybe, you know, consultants wanted to get something out of it for themselves. And if it hadn’t been for the very supportive registrar I would have been very upset. It was nerve-wracking enough going up to the hospital anyway to discuss this sort of thing, but then to be met with this, this anger that I wasn’t taking part in the trial. And I understand that people do need to take part in trials, that it is important that they get results, but I didn’t think that my particular situation was particularly going to be beneficial in this trial because I didn’t feel I was a normal person - well, an average person with ovarian cancer. Most people with ovarian cancer unfortunately are diagnosed at quite a late stage, which I wasn’t, and if they were going to do a trial about this, I didn’t fit into an average ovarian cancer patient. Neither was I an average ovarian cancer patient age. But it was very hard to deal with somebody being cross with you that you’re not taking part in a trial. And I understood that I could have opted out at any stage, but it left a bit of a difficult mark on me, really.

 

Did it ever cross your mind to say yes, wait and see what you were randomised to, and then if you were randomised to the arm you weren’t happy with, to drop out?

 

Yes, it did, it did [laughs]. But I still felt that actually that, that would make people angry as well, and that even, however many times you read the bit that says that your care won’t be compromised, you still have something at the back of your mind that if you opt out of something or if you change your treatment or whatever, there is going to be, somewhere along the line, an element of somebody may be thinking, “Oh well, she opted out of the trial”, that your care might be compromised in some way.

It's important to remember you can pull out at any stage and it won't affect your care. She...

I think you have to remember that at any stage you can pull out of the trial, however far you’re in or how little time you’ve been in, and you have to trust people that that’s not going to compromise your care, although I do understand the concerns that people will have about that.

 

Depending on the person, I think you want to get as much information as you can about it. To keep an open mind, and not to feel intimidated or bamboozled into taking part if you don’t feel that’s right for you.

 

And just going back to that issue about your own care being compromised, you said, obviously there are some factual ways in which that might happen like you don’t get extra appointments that you get when you’re in a trial. Did you ever say, at any stage ever think that you were treated differently apart from that as the result of not taking part?

 

I think I had adequate care. I don’t think my care was compromised. I don’t think I would have personally benefited from any further investigations that I might have had if I’d been on the trial. In fact, I suppose I think you might even think that it’s even more visits to hospital and more treatments, and just when you’re beginning to recover, you know, yet more visits you might not want to. Although that’s what I’m saying now - at the time, it may be that when you’re so involved in treatment that you do appreciate that additional care. 

It is important that trial results are explained to participants, whether they are positive or...

I think if somebody has offered to take part in a trial, then I think at the end of the trial it’s very important that they get some feedback on the results, whether they’re negative or positive, and I think there should be support available for those people who’ve taken part in the trial so that they are able to cope with the results. So that if they have gone, for example, through six months’ chemotherapy, which a trial has shown has not been beneficial, there is a system in place where they are able to air their frustrations about the additional side effects they’ve had, and dealing with the results that maybe what they’ve been through, although it’s produced a result, it hasn’t produced the result that they initially thought it might do. Because everybody goes into a trial thinking they’re going to help medical science and they’re going to help pave a better treatment or regime for that disease, and whereas it may stop people going through a particular treatment and experiencing additional side effects, to have gone through it and not quite got the results you were expecting you were going to contribute to, needs support.

 

I think nowadays with the internet people are more than able to find the results, and actually if they find the results in the quiet and space of their own home, and they come face to face with it with no support or nowhere to go to get some support, that is more damaging than being told by somebody, “Well, look, these are the results. We understand that you might be a bit frustrated or concerned or whatever, you know. If you’d like to discuss theses issues, please do.” I mean, for example, if somebody reads a magazine, a cancer support magazine, and then they publish the results, you know, you can’t hide from it.

 

Or somebody is going to say, “Ooh, wasn’t that the trial you were on?” You know, they were saying that it didn’t show the effect it was going to be on. But on the other hand if, if somebody goes on a trial and it shows that it is of benefit, you know, they might want to know additional material about the facts and figures of it. 

It's important to tell people about trials, but she wonders if clinicians always appreciate the...

I think it’s very difficult, because you have got to have trials, you have got to have something to prove that something works before it becomes licensed, and I think that that’s important. But I don’t think there’s always quite the understanding of the implications of taking part in a trial, and going through what people go through, and experiencing what may seem to a clinician’s point of view a minimal side effect, may not be minimal at all, you know. It may be something that makes a huge difference between somebody going back to work and somebody not going back to work, and all the financial implications that that involves.

 

What do you think could be done better to improve clinicians’ awareness of that, the patient perspective?

 

…I don’t know, apart from them going through the experience themselves [laughs]. Somebody was saying to me, I was discussing with somebody about something the other day, and I almost felt irritated because I could see that he had no idea what it was like to be in that situation at all, and he was saying, “Of course you’d do this, and of course you’d do that”, and I thought, “You don’t know, because if you’d been in that situation, if you’d just been through major surgery, you’ve just had six months chemotherapy, you wouldn’t necessarily come to that conclusion.” …it’s difficult because people want to be told about these things, and they want that opportunity to help. I think it’s very difficult to change it because you’ve got to press it a bit, really, for people to take on board and if people don’t take part in these trials, then you’re never going to get any results. 

She might be interested in taking part another time, but she has become a bit cynical about...

Have you thought how you’d feel another time? If another trial came up that was relevant to you, would you be interested, or would it depend on the kind of trial?

 

I think I’d probably want to know quite a bit more about it, but I think in a different circumstance I might be interested, but I think I’ve got a lot more knowledge now about making a decisions about, about trials. I’m still occasionally a bit cynical about them, I’m afraid. It’s made me think a little bit more about things, looking at it from a wider perspective really.

 

Tell me more. Why are you cynical?

 

Well, I just [sighs]… I don’t want to [laughs] – I think there’s a big push to get answers to things, which – and what’s, as I said before, what’s right for one person isn’t necessarily right for somebody else. And I think it’s unfortunate that people have to make these decisions at a very vulnerable time, when, you know, it’s difficult enough going through treatment without having to make a life-changing decision. I understand that for some people where, you know, the outlook isn’t very good, they want to grab hold of any trials that are going, because they want that opportunity to take part and, but I think if the opportunity came up again I probably would be interested to know. I’d probably do a bit more research about it. I’d ask people about it. But I think I’d still be quite determined to make my own decision, rather than being - I would take on board everybody’s views but I think I would want to make my own decision and not be swayed by anybody. 

Elizabeth asks clinicians to treat each person as an individual, respect their choices and give...

I think I would say treat each patient as an individual. And… recognise that they may have reasons for not wanting to go or take part in trials that you’re not always, you might not be aware of. And that they may have very good reasons that they want to take or not take part in a particular avenue of treatment, for reasons that they don’t always know about, you know. I think it’s very important that they realise, appreciate that each patient is an individual and however much statistics show that this is better than something else, for the individual it’s very important that they have, do, or feel comfortable with what they’re having. In fact I’ve just written a poem, [laughs] I’ve just written a poem about what we would like to tell the oncologists.

 

Do you want to read it?

 

Have I got it here? Well, it was just some of the things' however bleak thing are, please give me some hope, otherwise I’ll find it difficult to cope with the treatment I’m having. I am an individual. Despite all the research, there may be very specific reasons why I decide to go down a particular treatment route.

 

And then there’s other things like' I know there may not be any proof that certain diets or complementary treatments work, but I want to try and help myself in any way possible. It might not cure the cancer but it does make me feel better and gives me back some control.

 

And it goes on like that' It’s difficult for me to make a split-second decision about what treatment options I decide to have. I might need to go away, think about it and ask others before deciding what to do. The terminology is very alien to me, and it’s a huge responsibility deciding what to do when so much depends on it. I’m not the only one affected by my illness so please don’t threaten me. If I, don’t feel threatened if I want someone to sit with me, for my appointments, and ask questions. I need their support and sometimes they are able to remember things about my health that I don’t, and they are another pair of ears to hear what you tell me.

Elizabeth declined to take part in a trial in early stage ovarian cancer. She felt she did not...

I was in the hospital and I was visited by the consultant, and the first thing he said was that I was in a good position, which was unusual because I’d been diagnosed at an early stage, but he was very keen for me to consider going on a clinical trial to see if one particular combination of drugs was preferable to what was the gold standard treatment at the time. He told me all the facts and figures about it, and gave me a sheet, told me to go away and think about it and come back to see him three weeks later with a decision as to whether I wanted to go on the trial. And I took the information away, and it was a bit of a shock because my husband hadn’t really realised that I was going to need some chemotherapy as well. And we got home and we considered all the pros and cons, and I was in two minds whether to actually have any chemotherapy at all, or not, but a midway house seemed to be just to have the ordinary treatment, rather than going on a trial.

 

My son at the time was very keen that I didn’t lose my hair, which I would have done if I’d gone on the trials section of, the trial arm of the trial. And there were a number of other reasons I chose not to go on the trial. I felt that I’d been diagnosed at an early stage, and it wasn’t appropriate that I should have any stronger medication than I was already going to be having. I also felt I needed to have something in reserve if it did come back at any stage, and I didn’t feel that I needed to go overkill with medication that I was, it was being suggested.