The story of COPD: comparing and contrasting perspectives
| Patient perspective | Patient perspective: the exception (patient with α1 antitrypsin deficiency) | Professional perspective |
|---|---|---|
| A story with no beginning | Well rehearsed story of a dramatic diagnosis | Insidious onset |
| I've had it forever | A dramatic beginning | Long history |
| “How it started is anybody's guess; there is no way of knowing … so it has always been my belief that something happened in my younger years that started the damage.” [T06.1] Interviewer: “So when did it start?” “Um I think I was, I mean I’ve always been bothered with bronchitis and things like that through my life.” [L03.1] I'll tell you about a milestone … “About 18 months ago. It started off as a chest infection that I couldn't get rid of. It was going and it sort of cleared up then a month later it was back again.” [T01.1] … and choose a different milestone in subsequent accounts “It started when he broke his ribs. He fell off the ladder about four years ago and broke his ribs and then he got a chest infection and any time he coughed he broke his ribs again.” [T01.4 daughter in a joint interview with her father] I'll link it with the story of another health problem “I had a major op in the Infirmary in, 1985 was it? No, no, 94, 93. I had an abscess on the bowel. They thought I had cancer. I was worried.” [L04.1] I can't tell you “when” so I’ll tell you “how” Interviewer: “So when did it all start?” “Well first of all it was with smoking. I was a smoker and just couldn't stop.” [T02.1] “See he was a smoker …” [T05.1 wife] “We used to put that rubber on carpets and vulcanise it … we didn't realise that we were inhaling all that smoke.” [T05.1] | “I suppose the first place to start would be in diagnosis, really wouldn't it, official diagnosis was August 98.” [L06.1 wife] “Slowly deteriorating from about 92-93, I started noticing getting breathless and getting worse and worse. Now I am a carpet fitter, and I mean a lot of flats and everything, it was up and down stairs and this is getting worse. I was a smoker but it never bothered me before so I thought I have to stop this, so I did cut down on cigarettes, went to the doctor and got inhalers, take that home try that one, try that one not working, try that one, changed doctor and that is when in 98 he finally found out that it was this ‘Alpha 1’ thing. Nothing they could do for it so that was the day before we got married.” [L06.1] Interviewer: “Oh my goodness!” “Day before the wedding we found out he was basically a dying man.” [L06.1 wife] Interviewer: “Good heavens, how awful!” “So my lungs was away and I was 41.” “Because I was always active as a worker like, 18 hours a day sometimes, always busy then suddenly it was stop, because I couldn't do it anymore.” [L06.1] | “He has got a huge file because he has been known to us for quite a long time … the first time I met him was 1999 when I was asked by the GP to go out and do a home visit because he was having an exacerbation of COPD … but he had been given a nebuliser by a predecessor, that was in 1996, after he saw the consultant.” [F09.1 nurse] Insidious onset preceding diagnosis “Six or seven years. Six or seven years since it became … initially informally and then formally diagnosed the actual COPD problem, so I think I have seen her more than anybody over the years.” [F10.1 GP] “He was only diagnosed not so long ago, he has probably had COPD for years but official diagnosis was just about 18 months ago, like from the hospital he was diagnosed years ago in the community but he had a couple of near death experiences and that was when I got told.” [F07.1 nurse] |
| A middle that is a way of life | Emotional upheaval and a quest | A way of life for clinicians? |
| Part of ageing | Coming to terms with a long term illness | Only “ill” with exacerbations |
| “I fear I am getting worse (which is understandable), it's like any other illness. It's like ageing, you are getting older and that really is the illness is getting worse as well.” [F06.1] “I'm all right if I sit still. It's all just part of getting older I suppose.” [T03.1] Nothing to be done “Oh it's certainly not very pleasant no, but that's the way it worked out, you know I tried it, it's not going to work for me whatever the reason. There's nothing can be done.” [F02.1] Exacerbations are isolated episodes “Now I’m fine, but I had a bad time over Christmas. I got a chest infection at the beginning of December and it took me till Feb to shake it off. But no, I’m fine again now. Back to normal.” [T01.4] | “Yes, as I say we have been through the whole spectrum of emotions with it. The denial part is the hard one because … now we can discuss things quite openly without fear of ornaments getting thrown and things like that but when he was going through his denial phase, it was all my fault.” [L06.1 wife] Quest for information, support, and appropriate care “After I did the research on the internet we thought, well, we can't surely be the only people with this disease, there must be somebody else out there that we can ask or whatever.” [L06.1] “We joined a British based Alpha 1 support group, which is purely Alpha 1 sufferers and their families, and we went to a meeting at Swindon a couple of years back.” [L06.1] “I've done a lot of shouting at the council for four years to get re-housed and it didn't do much I has to threaten them with a lawsuit.” [L06.1 wife] | “People like Mr X who doesn't really bother us that much, we really only see him when he's not well.” [F08.1 GP] An established routine Interviewer: “I was going to ask you whether you have talked to him at all about what might happen in the future and how things might progress.” “No, not really. He usually has got his own [agenda in the consultation]. It's more reassurance about how he is and chatting generally and he just likes a bit of social discourse I think.” [L04.1 GP] Longstanding relationships “We know them so well, and we've always been able to do something, and then it's that part where for the rest literally what can we do?” [F07.2 nurse] |
| An uncertain and unlooked for end | Discussed and planned for | An uncertain and unlooked for end |
| I don't know when | I don't know when | I don't know when |
| Interviewer: “So, I’ll come and see you again in about 6 months time …” “If I am still alive in 6 months time.” Interviewer: “I hope you will be, do you think you might not be?” “I don't know.” [L04.1] | “‘We can give him morphine’ [The consultant] said. ‘Now, the downside of the morphine is it will do one of two things, it will either be he will just sleep away or it will calm his breathing down enough to let us start treatment’.” [L06.1 wife] | “Is this it? Another year? Three years?” [F09.1 nurse] “… he has been knocking on deaths door a few times now. I think the last time he came into the Royal we really didn't think he was going to make it through the night, never mind go home.” [L06.1 hospital doctor] |
| Unlooked for | Planning for the future | Unlooked for |
| “Even the doctor said that, it won't get any better. What I thought, actually I could stay in the same sort of level …” [F07.3] “So. I certainly don't think I’m getting any better, but I haven't got any worse I don't think.” [F10.4] | “It wasn't a difficult decision for me actually because having spoken about it at length before, you know, when he had bad episodes, about, you know, what we wanted to happen etc.” [L06.1 wife] | “Very occasionally I’ll bring it [death] up but no … I don't think generally they think they are going to die of that, of COPD.” [T01.1 nurse] “… we are all going to die aren't we, but it is a case of picking the time and place [to discuss it].” [L06.1 hospital doctor] |