Table 2

Illustrative quotes regarding ACP

Elements of ACP# QuoteQuote
1) Reflection on wishes and preferences regarding future ICD deactivationQ1 “I thought they implanted the ICD so I was not able to die”? Male patient, focus group 5
Q2 “When do I have to do this (deactivate—RS)? If I have problems with my heart? Should I do it if I get some sort of cancer? Or suffer from dementia? When to deactivate the ICD, that is a difficult question”. Male patient, focus group 4
Q3 “I have that fear (of shocks—RS) as well, and based on that fear I would say deactivate my ICD as quickly as possible when something happens. If I get sick or whatever, done with it”. Male patient, focus group 2
Q4 “Well I have the ICD simply to ensure that it intervenes if(…)a cardiac arrest would occur.(…)and there is no other way (to terminate the cardiac arrest—RS) than by getting a shock. So I think I’ll welcome it then”. Male patient, focus group 2
Q5 “There is of course a difference when you are terminal due to cancer(…). Because if you are terminal due to your heart disease, then such device is much more important. If you would deactivate then, then you will certainly go (die—RS). And with cancer, it can be very different”. Female patient, focus group 5
Q6 “I do not want my wife, children and grandchildren to stand beside my bed, while I am bouncing up and down in my last moment. I do not want that(…)so for me, it is clear what I want”. Male patient, focus group 4
2) Discussing preferencesQ7 “Then he (the cardiologist—RS) told me(…)we could also deactivate halfway through. Well, I thought that was a wonderful thought”. Male patient, focus group 3
Q8 “You come in as a patient, you feel like you are giving your life to such a doctor, because that is what it comes down to(…)and he does not take sufficient time to explain it properly, such an important issue as the end-of-life. And that always annoys me(…)they just do not take the time for it. You are there for ten minutes and that’s it”. Male patient, focus group 4
Q9 “(…)I think the cardiologist should pay more attention to that (the ICD at the end-of-life—RS), they should realize that it is a very important topic to us”. Male patients, focus group 4
Q10 “I did not have this conversation about when to turn it off, but I do not miss it at all. Because then I think well, I really am in a phase of getting better and cure, so then I think yes, I am not waiting for this (conversation about ICD deactivation—RS) at all”. Female patient, focus group 2
Q11 “I have talked about it with my children, but they really do not want to know about it yet”. Female patients, focus group 5
3) Recording and reviewing preferencesQ12 “I do think about it (deactivation—RS) every now and then, but to record my preferences, let me just say it, that is going too far, because you do not know what it is like when you are at that moment, that you are what you recorded”. Female patient, focus group 3
Q13 “I will make an advance care directive, not so much because of own situation, but because of the fact that my father died six months ago and he had one. Back then I though well, everyone should have such a document because… well, for me it felt good and I will make one myself as well”. Female patient, focus group 2
  • ACP, advance care planning; ICD, implantable cardioverter defibrillator.