"I just want to be fixed" | |
Theme 1: the informed consent experience | |
Diverse consent journeys |
"When I came to the hospital they told me that I probably had a few small heart attacks. I was given information. But to tell you the truth I may have glanced at it. I don’t really know whether I went into it with a fine toothcomb but I was aware of it anyway…Before the angioplasty the doctor went through the consent form. But the thing is the amount of information that’s fed to you is enough to frighten you to death actually. I think maybe it’s a little bit too much" (female acute patient 6, interview). "Seven days I was waiting at (admittance hospital) before they took me over to (treating hospital) for surgery. It was ridiculous, what a waste of money keeping me in, but if they’d have discharged me I would have been back of the list. I had some information about angioplasty at (admittance hospital) but signed the consent form at (treating hospital) and saw the doctor there just before" (male ‘treat and send’ patient 33, interview). "With the elective patients, about six or seven people will have spoken to them about the procedure before you stick a needle in them. So they get enough time… slightly less discussion with acute coronary syndrome patients because they are in the hospital rather than coming in to clinics as an outpatient" (interventional cardiologist 3, interview discussing elective patient journey). |
Information transfer |
"The most common risks are bruising and bleeding, either from the wrist or from the groin. And usually we can just treat that with pressure. Occasionally, we damage the artery and that might need a surgical repair. Other problems are, you can be allergic to the dye but we know you had it last time so I don’t think you’ll be allergic to it. The dye can cause problems with your kidneys and you have diabetes so you need to make sure you’re well hydrated afterwards…"(interventional cardiologist 11, audio recorded consent discussion). "I’m fairly happy and confident in consenting almost all patients who come in for angioplasty, I think I’ve assisted and seen quite a few cases, but there are still cases where I might not be able to quote an accurate risk, especially in someone who’s undergoing a very risky procedure" (cardiology registrar 2, interview). JP: "Do you think that patients want to know about the risks?" "Some people will just outright say, ‘I don’t want to know about the risks’. I accept that and say ‘that’s fine’…it’s wrong to say you might die, you might have a heart attack, you might have a stroke. They just don’t want to know. They will say, ‘right I trust you; you get on and do what you think you need to do’. I think that is perfectly reasonable" (interventional cardiologist 6, interview). "So there are three ways we can treat that. Tablets, heart bypass surgery or angioplasty. It’s not that easy to justify a major operation which carries quite a risk and obviously the older you get that risk is just a little bit more. So the other two options are either tablets or stents, the angioplasty. Okay. That’s unblocking it with the balloons and the stents. I think we could be fair to say the tablets haven’t really worked. From the investigation you had last week we know what needs to be done (angioplasty)"(interventional cardiologist 4, audio recorded consent discussion). "The only thing was at pre-op assessment I was told about heart attack, a stroke and mortality all in the same sentence. I wanted to know what the separate risks for those things…but they didn’t have that information…when I got to see doctor X (on the day of the procedure), he got the information straight away but that was right before I went in" (male elective patient 9, interview). |
Theme 2: role and expectations | |
‘A formal event’ |
"We often only interact with the patient on the day of the procedure… by the time they come to the catheter lab…somebody should have gone through what we’re doing and why we’re doing it" (interventional cardiologist 14, interview). "Patients usually want to make sure that I’m going to do the procedure or not. In most of the cases I’m consenting (completing the consent form) and someone else is doing the procedure so after our conversation they will see the consultant who is going to do the procedure and the patient will feel more confident about the doctor and they can confirm everything for them" (general cardiologist 7, interview). "The surgeon came and gave me booklets and wanted me to read them. I said to him, 'Look, do you know what you are doing? If you do, just get on with it. I do not want any of this nonsense.' If there was a form to sign I signed it, and that was the end of it" (male elective patient 5, interview). "He probably thinks, "I’ve lived a lot of my life and I've got to this point now without worrying about red tape". They often see it as red tape and paperwork. I think he was probably thinking that this was all political correctness and red tape but he was thinking "I've got to where I am without bothering about this; let’s just get on with it" (interventional cardiologist 1, interview). |
Expectations of treatment |
"I decided to have it as soon as doctor X said about it because there was so much pain for me attached to the simple things I was doing, walking downhill and so the choice never entered my mind. I was just quite happy to go along with what they recommended, you know I just wanted my old life back" (female elective patient 21, interview). "It was a one way street for me and it was going to stop me having another heart attack. I want to stay alive and that’s it really" (male acute patient 11, interview). "I knew what it was all about …he explained it all to me, and I said yes, and I just signed the consent form, because I had nothing to worry about if I knew doctor X were there, because I mean he had done it before" (male acute patient 15, interview). "I fully recognised what they were doing and when they didn’t (put a stent in) I was upset because I thought they would do it. But we are back to square one and so I have six weeks of these tablets and take it from there…but I don’t want a bypass at 80 odd years old" (male elective patient 8, interview). |
Theme 3: deciding to have treatment | |
‘You’re the expert doctor |
Doctor: Is there anything else you want to ask? Patient: "It’s really about what I’m going to feel like after it's been done. I need to get back to work, I'm a policeman…I've been off since the end of September…so how quickly am I going to be able to get back to work, really? Doctor: "It depends what…how much we do today. So if we get all the arteries open today, then in terms of physical activity, I’d be pretty happy for you to return to physical activity almost immediately…." (male elective patient 36 and interventional cardiologist 13, audio recorded consent discussion). "I’m a firm believer in if the medical professional can give me a decent reason, or a reasoned explanation for doing something, then I’m quite happy to go along with it. I’ll do a little bit of research…but I’m prepared to be guided by what the doctors say. What’s the point in saying no? You’ve got to gulp and get on with it, they know best" (female elective patient 18, interview). "There was no decision for me to make. The doctors recommended that’s what needed to be done. And there’s no point it crossed my mind not to have it, no. Never. The risks do cross your mind but they don’t take more than two seconds to weigh up the pros and cons and come out with an answer"(female elective patient 22, interview). |
A 'Hobson’s choice' |
‘So if you know there’s risk, you decide either yes to have it done or no. And the thing is you’ve got to have it done, so you've got to take the risk" (male acute patient 20, interview). "I knew how I was feeling and I couldn’t cope very well with the feelings I was having, getting out of breath and things like that. So I thought well I haven't really got an option" (female elective patient 24, interview). Well, the decision was made beforehand because doctor X said to me, when I went to see him, he says, “We’re going to have a look inside your heart." He says, 'We’ll put a camera in and this, that and the other'and I just turned round to him, I says, ''Well, whatever’s got to be done, do it.' You know, there’s no choice really. I’d sooner you do it than mess about for four or five months and then come back later. Do it. You know, do it straight away, don’t hang about. Just do it, and that’s what they’ve done" (male elective patient 10, interview). |