Background
Methods
Study design
Setting
Sampling
Recruitment
Data collection
Interview topic | Areas covered |
---|---|
Background | Age |
Social circumstances | |
Duration of kidney problem | |
Duration of attendance at nephrology department | |
Current functional ability | |
Understanding of illness | Understanding of their kidney disease |
Illness impact | How the kidney disease is affecting them, including:• Overall impact on their life • Particular effects – both physical and psychological • What is changing for them • Impact patient perceives on family/carers |
The relative importance of the different factors described [Prompt: the role of symptoms] | |
How they see the illness affecting them in the future | |
Information and decision-making | Experiences of illness information and involvement in healthcare decisions, including: • Factors influencing the experiences • Relative importance of these factors • Anything which might cause a future change in decision • Prompt regarding dialysis decision if not spontaneously introduced |
Analysis
Ethics
Results
Participants
Participants | 20 |
---|---|
Gender | |
Female | 11 |
Male | 9 |
Age | |
< 75 | 2 |
75–79 | 5 |
80–84 | 8 |
≥ 85 | 5 |
Marital Status | |
Married | 8 |
Widowed | 9 |
Single | 3 |
Ethnicity | |
White British | 18 |
Afro-Caribbean | 1 |
Other | 1 |
Renal Diagnosis | |
Diabetes Mellitus | 5 |
Glomerulo-nephritis | 3 |
Renal vascular disease | 2 |
Unknown | 9 |
Other | 1 |
Karnofsky Performance Status Score [56] | |
40% | 3 |
50% | 3 |
60% | 4 |
70% | 7 |
80% | 3 |
Modified Charlson Comorbidity Index Score* | |
2 | 2 |
3 | 5 |
4 | 5 |
5 | 4 |
6 | 3 |
8 | 1 |
Results
Participant views and experiences of staff-patient communication
“I mean it’s, it’s a very, very nice feeling to be able to go there and know… that you can ask them any question you like. It doesn’t matter how it sounds to be but to you it’s important and they answer you and they’ve got time, that’s the thing, time for you…” Walter.
“Maybe, if he [the nephrologist] had asked me [pause]… I … kind of knew, I think, but if he had asked me, maybe, what do you think…or…what do you understand? So I could kind of hear things more slowly. But I don’t think he liked talking about it, he just wanted to get it done and out and on, quickly.” Joseph.
“It’s been good if it is easy to understand, if it makes sense, if it is in my sort of language… not lots of medical stuff I don’t know. [Name of renal palliative nurse] is very good at that, anything I don’t understand she’ll tell me, blood tests or something.” Dorothy.“I didn’t know I had a problem with my kidneys until I was at the diabetic clinic when they said they would ‘keep an eye on’ my kidneys. But that didn’t really mean much to me, keeping an eye on my kidneys, you know. And it wasn’t until I was referred to [name of nephrologist] and she explained things to me, that I realised it, it was quite serious.” Florence.
“I get the impression they don’t run away from it there [at hospice], they know you’ll die and meet that head on, like [hospice nurse], when she came she was honest and spoke about it, but not to make it worse, just to explain, what to expect and what to do.” Charles.
“[Palliative care] went more steady about things, gentle… Knew how to talk about things. Not a sort of blunt approach… ‘let’s get this done’, but more… ‘well, let’s find out what’s happening, is there anything we can do…what would you like to know?’ … Don’t misunderstand me, they could still talk about difficult things, what was happening, not having the dialysis and what that meant. It was just the way they did it. Gentle, and a kind of personal approach.” Joseph.
“[Name of nephrologist] himself when I was still in the hospital, he said ‘If you’re still here in a few weeks or a few months, then I would be gobsmacked’ he said, not a phrase we liked. ‘If it lasted a year I would be surprised’ would be better.” Charles.
“You feel more relaxed, I mean, knowing there’s always somebody there. There’s always somebody you can turn to, and I think that’s an ever-so-nice feeling, gives you a feeling of, a little bit of confidence in yourself I think.” Donald’s carer.
“It was a bit of a problem in the beginning. (Pause). It was…er…it was not very good…I have to be honest…in the early days going back and forth for the tests and so on, it wasn’t very easy. Every time seemed to be some new doctor, usually I think it was the junior doctors, the regist… registrars are they?” Betty.
“It did worry me at the time. It upset me very much. I felt quite down, quite depressed about it. It was like being written off, in a way… like, ‘We can’t help you, so off you go, not our problem, just cope with it.’ It made me feel awful.” Joseph.
Information provision
Receiving information from staff
“They’ve been very good, all the way, just ask anything and they tell you. There’s never been any problems like that, or not finding out what you wanted or anything. No, they’ve been good, very good.” Walter.
“[The renal nurse] went all into it in, in, when I first went over there. I was, you know, I was really surprised, cos normally you go in to see the nurse and oh yes, they, they do what they gotta do and that’s it, but she did go in to everything and... she was so good, explained it all. Made it all so clear.” Donald.
Interviewer: “Can you tell me, have the, the doctors and nurses explained much to you about your kidney problem?”
Lilian: “Not really, I suppose. I don’t know. I suppose they did, but I’m so forgetful now that I forget all about it [laughing].”
Missing conversations and gaps in information provision
“They should have said to me earlier about the problem… ‘Cos they must have known about it for some time… As soon as there’s a problem, yes, I think you should know about it and if there anything you can do.” Florence.
“I think they [junior doctors] didn’t know what to say sometimes, and it often seemed to be a case of ‘Well, let’s see next time.’ There is only so many times you want to hear that. I’m not silly… I know how to put two and two together…and I was beginning to work things out. But it took them a long time to tell me, really. I don’t know if it was that they didn’t really know for a while, or they didn’t want to say, but I felt it wasn’t good, no.” Betty.
Karif: “I was upset…at the beginning, yes.”
Interviewer: “Mmhm……what upset you?”
Karif: “That I was sick… I was sick without knowing… That I was doing things I was not supposed to do.”
“It bothered her a lot. Not me. I think… if you need something done then they’ll do it, won’t they? I reckon I didn’t need anything before then. The wife thinks different… she says if they can’t tell you, if it takes seven years for someone to tell you what is happening, and they say, well they can’t do nothing about it, but then all of a sudden they start sending you all these letters to go to [the renal unit] to see a nephrologist … she says they ought to have done something before.” Michael.
Charles: “In the background of my mind all the time is this wish to know a little bit more about the next phase… I do understand that they can’t say nearer than so many weeks, so many days but it leaves you, it leaves us both in a strange limbo which the world, the world becomes unreal after, you just have no idea but it becomes so much part of you that you forget to say it.”
Interviewer: “And is, is that something you’ve been able to ask professionals about?”
Charles: “Been able to ask but they’ve always been very skilled in not telling you. Except [name of hospice nurse], she was honest, but none of the others. Most of them, well there’s kind of a lot of hedging… they just don’t know, and aren’t able to talk about not knowing very well.”
Information preferences
Interviewer: “Yeah, some people prefer to have more information and some people prefer to have less. What about you?”
Charles: “Oh yeah, obviously more, more. The more I understand, the better. I always have wanted to know what’s going on, to try and understand – it helps you to know what you can do, doesn’t it?”
“I said to [renal nurse], ‘Don’t tell me about all this dialysis, will you, because I don’t want to hear about it’. I’d already made up my mind, so what was the point. But she was trying to be sure I understood what I was turning down, so that’s fair enough.” Betty.
“They have to tell you, unless of course… they know their patients and they can say ‘Well, I don’t think it’s a good thing to tell this patient ‘cos she could get hysterical and throw a wobbly’… but for me I think I would have liked to have been told. They should have told me sooner. But then perhaps other people wouldn’t like to be told. I don’t know what the answer to that is, at least not for everyone.” Florence.
“It gets to a point – certain things really it’s probably best not to know, but I don’t know. Sometimes I don’t ask, because it makes you worry, but then you still worry if you don’t know.” Harold.
Michael: “One of the things I’d like to know is how long my kidneys will last but they can’t tell you that exactly, and they said four or five years, so that’s not their fault is it? I want to sit down and get real answers, but the answers aren’t always there, are there?”Interviewer: “That can be difficult. What do you think?”Michael: “Sometimes, you get the feeling that they don’t know either… So if I ask about the kidney that’s one thing, but then if I ask something more … difficult [pause] … like what’s going to happen to me when… that, they don’t know the answer to… but they don’t always say.”
“I suppose kidney trouble is the same as any other trouble, eventually it takes over you and you die. This is, this is the truth of it… I went up and they said, ‘You want to know what’s going to happen in the end?’… No, no I don’t.” Mildred.
“I haven’t asked, and nobody’s said anything, is, how will the end arrive, you know. Will it be painful? Will it be a nuisance … or will it just, you know, fade away? I don’t know…”“I’m wondering, you know, what, you know, will I be so doddery I won’t be able to move or make a cup a tea or something… that’s the only thing that worries me… I’m not sure that I want to know. I wonder sometimes whether I should, but I think, on balance, I’d rather not know what the future holds.” Jack.
“I think it helps if you’re straight with them, then they’re straight with you… Makes it easier all round… they know that I want to hear what’s what even if I am [age 80-84]. And if that’s how I am, then it is easier isn’t it, for them to tell me what’s going on, no fussing. And we’ve talked about dying… what might happen and when.” Dorothy.
Dialysis decision-making
Agency and preferences
Interviewer: “Who made the decision?”Betty: “Ohh… I did, I did. Yes, I was quite clear. Dr [nephrologist] said I could have dialysis if I wanted it, but I couldn’t see the point.”
“Some of the doctors that I talk to… say, well if it had been them they’d have probably made the same decision, so that reinforces the, the decision I made was right, and I made it on my own.” Jack.
Interviewer: “So did you make that decision or did the doctors?”Grace: “I say no. [Name of daughter] she say no. Doctors say yes [laughs].”
Interviewer: “So you made it clear to them what you wanted?”Grace: “Yeah, yeah. Doctors say to me I be dead by Christmas without it. Am I dead? [Laughs]. No, no. no. They don’t know [laughs].”
Donald: “No, I didn’t want it [laughs]. Didn’t want the dialysis. I was better off out of it and I, I quite agreed with what [name of renal doctor] was saying... he was the one that says it wouldn’t be a good thing for me, and I thought well if they can do something without dialysis, I mean it’s not broken, don’t interfere, sort of thing, you know…”.Interviewer: “And who made the decision would you say?”
Donald: “Oh, the doctor did, [name of renal doctor] did alright, he made it all clear, but I agreed with him… I’d say if I didn’t [laughs].”
“If I’d had to… then it would be me, wouldn’t it? I mean it would be me deciding and me feeling responsible for things, like if it was right or not, and I don’t know do I? Really I don’t. It’s much better if the doctor says it, then it’s not down to me like, and I don’t worry.” Mildred.
“I made it on my own, I came back and told the boys [his sons] what was happening and, and they just said, ‘Well it’s your life and your decision, we’ll back you whatever you do,’ you know, and that was it.” Harold.
“My wife wanted me to have it, she said, ‘You’ve got to have it, you just can’t not have it.’ But I told her, it’s up to me, and I want to live ‘til I die, not stop in a taxi or sat in the waiting lounge half my life.” Michael.
Reasons for treatment decision
Interviewer: “And what was it about dialysis that really didn’t, you didn’t feel was right for you?”
Charles: “It was a prison sentence, this terrible joining of a club that you knew had only one door… I wasn’t surprised at all that they had to work like hell to keep your spirits up.”
“It was the travelling to and from London three times a week for the dialysis and then it was for four or five hours, whatever it took.” Colin.
“She [friend] died anyway. She died although she had dialysis, anyway. So what’s the point of that then? See what I mean… She used to have to be in at a certain time because she had it at home or something… And she could never go anywhere because she had to be back at certain time, yeah. I just couldn’t be bothered with that [laughing].” Lilian.
“She showed me the bottle of stuff and I thought… where am I going to put all that?... I’ll have all that all in my bungalow? That’s the sort of thing that I would think of.” Mildred.
“I’d have to go into hospital and have an operation, general anaesthetic to have this thing put into you, in your arm, or whatever it is and then I didn’t want that either. Not at my age… it is better to go with all your dignity, doing things your way, not with tubes and machines and other people dictating… it makes it all on their terms, not my terms.” Florence.
Feelings about the decision
“Mentally, I was very depressed when they told me I couldn’t have the fistula… that was ten months ago, so I was very depressed then, but I didn’t agree with it, certainly it wasn’t right what they said about the two months to go… but now, I don’t know how far I’m going to go.” Joseph.