Background
Method
Study design
Patient recruitment
Data generation
Analysis
Results
Characteristics of the sample (n = 25) | |
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Sex female/male | 14 (56 %)/11 (44 %) |
Mean age (range) | 85 years (71–98) |
Marital status single/widowed | 20 (80 %) |
Living situation | |
• Home | 18 (72 %) |
• Assisted livinga/Nursing care home | 7 (28 %) |
Main care support | |
• Family | 8 (32 %) |
• Spouse/partner | 5 (20 %) |
• Nursing service | 9 (36 %) |
A. Patient understanding of disease and prognosis | B. Delivery of health care |
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1. Dealing with advanced heart failure and ageing | 1. Perceptions regarding care |
a. Perception of heart failure | a. Appropriateness of (medical) care |
b. Adaption to changing conditions | |
c. Appraisal of quality of life | b. Continuity of care |
d. Information regarding the illness | 2. Interpersonal relations |
2. Dealing with the end of life | a. Interaction in the processes of care |
a. Value and worthlessness in old age | |
b. Preparation for death | b. Specific aspects in physician-patient interaction |
3. Meaning of familya |
A: Patient understanding of disease and prognosis
A1: Dealing with advanced heart failure and ageing
Patient P1, T3 (73 y/o female): But my heart, that’s not really the problem. (…) That is (…) high blood pressure. Yes, I have that! Oh, yeah! You know, now … now I have it under control. You know, I have never taken any pills. (…) Yeah, and I watch out for my blood pressure. But if I say I take my tablets, that … I do not do that anymore.
Patient HD20, T3 (90 y/o male): I’m feeling, shall we say, “old”. Yes. Well, the physical weakness can’t be overlooked so that takes precedence. And still, the heart pain is not so severe that I would say that my heart is the top priority. (…) I don’t feel like I have heart disease. Yes, I feel restricted in … movement, restricted in the range of activity, but compared to my heart, I would say that my knees aren’t as mobile. They stop me from walking or running properly, which is actually worse than the shortness of breath (…).
Patient HD20, T5 (90 y/o male): Well, my kidney values … I have not paid any attention to them to date. The creatinine levels deteriorated rapidly. (…) And I’m really afraid of that. This I tell you frankly: I’m afraid, because I know what that means. That means weekly visits for, say, haemodialysis, which takes four to five hours, and to the doctor or for treatment … coming back here or wherever. (…) And that is so … it’s so … my, my … I would say my daily routine. But that is my main … my main problem. That is … you know, my kidney values are very bad, they are still working an average thirty percent. I don’t notice anything. Well, yes, I do notice something… um, my heart force levels are still at fifty percent. The big problem in my case is water retention throughout the body.
Patient HD20, T0 (90 y/o male): [laughs] Yeah, I have to take it easy … take it easy, no longer pursue everything in my thoughts and desires, but I have to hold back. The heart somehow says: “Stop, don’t overdo it. You can’t want everything. But what you do take on, don’t do as much.” But that … that’s what I’m starting to see. But [laughs] not yet. Not yet.I: Are you still in the process of doing so?P: Yes, it’s hard enough cause when you are shown your own limits it’s sometimes painful.
Patient P15, T3 (93 y/o female): … Because that’s only at long intervals or because I’m used to it, that I get no … no air. This is perhaps through the many years that I already have, even from my young years, I was always a bit limited. Now I always think, “Relax and calm down, it will pass.”
Patient P10, T1 (94 y/o female): And that [chest pain] … I don’t want to have that again. (…) No, not ever again, then the Lord God can take me back, but I couldn’t go through that again.
Patient P22, T6 (89 y/o female): Yes, if it’s still possible. Well, my greatest wish is and always was and will be that, in old age, I hopefully will not have the experience of noticing myself that I’m losing my mind. That is one thing that would be difficult for me. Although they always say that if you are demented, you don’t notice it anyway and so on, that is a … to me, that a rather horrific thought. (…) That is already a … a burden. I think not only for us old people, but also for .. for younger people, you know. Right, but it’s better if you push it to the back of your mind and say ((she laughs briefly)), it will not happen to me, no.
Patient P15, T3 (93 y/o female): And it doesn’t really matter anymore if one comes to this. Then, eh, it is all the same to me now, and if one is completely run down, then I couldn’t care less, the main thing is that one has support and care.
Patient P1, T6 (73 y/o female): And also in hospital, and as I know, I made a huge mistake: I have not always asked why, why, why. I didn’t want to know, no. (…) Yes, it’s my fault, I do not know how this could happen. Yes, if he [the doctor] tells me something, that I have such and such I’d get quite fuzzy-headed, then I’d get sick.
A2: Dealing with the end of life
Patient P23, T1 (85 y/o female): Because – I think, uh, life is, I don’t know, I do not know, it’s not worth living. Although I’m very attached to my grandchildren, a lot. (…) But apart from that, I always say one shouldn’t grow old.Neighbour: Why? Eighty-six is not old?P: Of course it is. It’s an old frigate.
Patient P15, T1 (93 y/o female): Every day I think it may be the last, you know. (…) And I pray that I will fall asleep and never wake up again. (…) And I don’t wish anything else, just a pleasant parting, a fast one, yes, just falling asleep.
Patient P1, T3 (73 y/o female): … But I was, well, a bit frightened … When you’re dead, then you’re gone. (…) Then I thought, “Oh my God! What will still be there and remain when you are dead and gone?” (…) You know, and now I say, everything is on order for my family, and that reassures me. Yes, that reassures me now.
Patient HD17, T1 (83 y/o male): Well, if you, if we had strictly gone by the advance directive, I would not be sitting here today. Well, that is – for the life of me, I cannot imagine instructing someone: “You must absolutely do this”. And still one thinks, I think, the doctors, if there is still a possibility that I might pull through or not pull through, regardless of the advance directive. And if the doctors say there is .. there might be even a ray of hope, then I as a layman cannot say “No.” I see that, when you’re in the midst of pain, like the agonies I have had, then you say to yourself – I tell you in all honesty, I have often wished that [I might] just close my eyes and the suffering would come to an end. Because if you … It’s as someone had put a rope around your neck and is choking you, and doing that for three weeks. I couldn’t … I was gasping for air and could not breathe.
Patient P2, T1 (75 y/o male) You know, my family knows how I think and what I want if it gets to the point that, say, artificial feeding or something like that is required, they would absolutely decline that. That’s what I’ve said. And since I don’t make a big effort, I don’t write anything, afterwards they [KK: physicians] go from the beginning, don’t do that, don’t do this, let it be. My family knows exactly how I think and that’s the way it is.T6 I: … An advance directive about life-prolonging treatment, whether you want that or not?P: No, I do not want that. … But my children, they all know that I do not want that.I: Have you talked to your doctor about it?P: No, I haven’t, I don’t talk about stuff like that with my doctor! If I did, then I’d do it in the hospital. If I were admitted to the hospital now, then I would say, “Listen up, so and so, if something is wrong now, do not hook me up to tons of machines and equipment! I say, when it’s over, it’s over!”
B: Delivery of health care
B1: Perceptions regarding care
Patient HD12, T2 (84 y/o male): “I only want to feel better. But it seems it’s not to be, nothing good. Being ill, there’s nothing wanted, nothing needed, it’s always the same. (…) I don’t need anything, I can be quite alone. Pain everywhere (…)
Patient HD06, T1 (85 y/o female): So you know, if a patient is really ill, yes, it’s good when you have someone who looks after you. I mean, I do not want too much care, it would be too much responsibility for me, you know. But if you’re not feeling well, it’s good to have someone.
Patient P22, T3 (89 y/o female): … After the [hospital] treatment, the professor indicated the only option was the day unit for this and that. And I told him I don’t want that, I don’t want to come daily. I’ve just come back from hospital.
B2: Interpersonal relationships
Patient P1, T1 (73 y/o female): … It was my first time in the hospital. Some of the nurses there were rather unpleasant. Because, you know, I couldn’t move, not at all. And if I rang, there was a long delay; I would lie there in pain on my back or askew. They also treated me so impersonally, and didn’t ask what the problem is or if it’s better. “Sorry, we don’t have time now.” Because of this, I swore to myself that I wouldn’t get so ill again that I would need to be in a hospital (…) And then I got a little better. And then they started talking to me … when I didn’t really need them anymore.
Patient HD17, T4 (83 y/o male): And three days before I collapsed with a heart attack, I noticed something [was wrong], and then I went to the doctor, but she was not there (…) And her husband was also a doctor, so I went to him. “Oh my,” he says. I said, “Doctor, I’m not feeling well,” and so on. “Well, you have to consider your age, and also the weather.” Later I collapsed. He did not examine me, did not take my pulse or blood pressure; he didn’t do anything. He used to be a mason but re-trained. (…) But I think he’s still a bricklayer.
Patient HD 20, T0 (90 y/o male): Perhaps to more clearly emphasize the risks, the risks of the disease … the risks and dangers. Because he [KK: the GP] he had us there … Here and there, there in the reports, he said something about heart failure without saying what it actually meant. Or he mentioned, um, “palpitations”. Those are two examples that spontaneously come to mind now. Then, I would have liked for him to have put it to me more clearly, and that he had said, you have this and that and need to watch out for this.