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Abstract
Objectives This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions.
Methods A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individual's account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential triggers.
Results Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers.
Conclusions Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic assessment when a trigger is detected.
- Chronic Obstructive Pulmonary Disease
- Terminal Care
- Prognosis
- Supportive Care
- Hospice Care
- Social Care
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Introduction
Morbidity and mortality from chronic obstructive pulmonary disease (COPD) are on the rise, and by the year 2020, COPD is predicted to be the third leading cause of mortality and the fifth leading cause of morbidity worldwide.1–3 Patients with very severe COPD experience poor health-related quality of life, comparable to, or worse than, that of patients with advanced lung cancer,4 ,5 and associated with significant physical and psychological symptom burden.6 Despite global calls to extend provision of palliative care to all people with progressive, life-limiting illnesses through the early identification and impeccable assessment of care needs,7 there is minimal progress in designing or evaluating interventions in the context of COPD.8–10
Historically, palliative care services have been predicated on the ability to identify those approaching the end of life, and for whom holistic assessment and supportive care is appropriate.11 However, despite recognised prognostic indicators,12–14 and validated multicomponent indices,15 ,16 accurate prognosis for an individual with severe COPD is very difficult,17–20 challenging the concept of advance care planning and leading to concerns that ‘prognostic paralysis’ may inhibit proactive holistic care.21 ,22 This uncertainty is echoed by patients with COPD, who recount their illness as a lifelong narrative with ‘no beginning, a middle that is a way of life, and an unanticipated end’.23
Rather than predicating provision of care on an unpredictable prognosis, an alternative approach may be to focus on the narrative of living with COPD,24–26 in order to identify opportunities or events which might trigger an assessment of holistic needs. To act as a trigger, an event must have significant meaning for the patient and/or carer, be visible to one or more professionals involved in the care of the patient, and have usability in terms of the potential to take useful action.27 ,28
We explored this concept within multiperspective, serial, qualitative interviews of people with COPD, and their informal and professional carers,23 with the aim of identifying events within the narratives which may act as triggers for the provision of holistic care.
Methods
We undertook thematic and content analysis of already conducted serial interviews with patients with severe COPD, their carers and the professionals undertaken at 6–9 months intervals over 18 months during 2007–2009,23 with ethical approval obtained from the Multicentre Research Ethics Committee for Scotland (B) and governance approval from National Health Service (NHS) Lothian, NHS Tayside, and NHS Forth Valley. The methods have been fully reported previously,23 but an overview is provided here.
Participants
A purposive sample of people with COPD (representing diverse ages, social class, rurality, smoking status and informal carer arrangements) were recruited from primary and secondary care in three regions in Scotland. Clinicians were asked to identify participants using the ‘surprise question’ (‘Would you be surprised if my patient were to die in the next 12 months?’)21 and recognised prognostic indicators.13 At each of the four serial interviews, patients nominated an informal carer if they had one, and a health or social care professional whom they regarded as important to their care, thereby creating ‘interview sets’. Informed written consent was obtained at the beginning of the first interview and reviewed verbally before each interview.
Data collection
Interviews with patients and informal carers took place at a location of their choice: jointly, if preferred by the patient. Professional carers were interviewed by telephone. The indepth participant-led interviews for the initial study (MK) allowed people to tell their illness story in their own terms and at their own pace. Issues covered included the experience of living with COPD, the patient's main concerns (whether physical, psychological, social, or spiritual), views on care and treatment, and carers’ needs and concerns. Interviews lasted between 40 and 150 min and were audio-recorded, with consent.
Data handling and further analysis
The interviews were transcribed verbatim were entered into NVivo 8 (QSR International, Doncaster, Victoria, Australia) for further analysis using the original, uncoded and unmarked copies. The further analysis capitalised on a rich data source from the original study previously reported.23
A combination of thematic and content analysis was employed.29 The transcripts were read as a whole, reread within the different participant groupings and then coded by DC using a thematic coding scheme developed and revised iteratively in discussion with the research team (including MK who had undertaken the interviews). Themes were explored and coded in patient, carer and professional groupings, enabling exploration of similarities and differences within and between the groupings.
The characteristics of a potential event to act as a trigger were explored using the framework of (1) having significant meaning for the patient and/or carer, (2) being visible to the professionals involved in the care of COPD and (3) having clear usefulness for patient and professional in terms of triggering potential actions.27 ,28
To aid data synthesis and interpretation, emergent themes were discussed within the multidisciplinary research team (led by DC), ensuring that the ongoing analysis was fully informed by the knowledge of the data and insights of the researchers (HP, MK) involved in data collection.30 ,31
Results
Participants and the dataset
Overall, 21 patients, 13 informal carers and 18 professionals provided a total of 92 interviews at four timepoints over 18 months. Eleven patients died during the course of the study. The schedule of interviews and characteristics of the participants are given in tables 1 and 2. Table 3 explains the convention for describing the participants and the interviews.
BOFA recruitment schedule [Overview of participants and the interview schedule for the BOFA study]
Characteristics of the patient participants (n=21) of the BOFA study
Convention for describing patients and interviews
Overview of findings
Through their narrative accounts, patients, informal carers and professionals recalled many events within the lifelong disease trajectory of COPD. These events fell broadly into two categories:
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events that signify increasing burden of disease
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events that correspond to interventions addressing the consequences of advancing disease.
The findings are reported within these two categories, exploring the potential of the events to act as a trigger in terms of its meaning, visibility and use. Additional quotations are given in online supplementary table S1.
Events that signify increasing burden of disease
Meaning: recognised deterioration in physical and social functioning
Almost all the patients spoke of the significant burden of symptoms which impacted on everyday functioning and activities. Progressive breathlessness and the limitations it imposed caused frustrations as everyday, banal and practical activities become a daily struggle, sometimes affecting psychological health. The majority of the patients related how their condition had caused a change in their activities including many from which they derived pleasure.
Nobody likes not being able to breathe properly but what really gets me is not being able to do anything, I used to do all my own decorating, painting…I quite enjoyed doing it, can't do it any more…it's all small things! [F02.1 (patient)]
Well won't say I can't do, I can't do them as quickly as I used to, like gardening, which I love—it takes me three days to mow the lawn…yes it is frustrating…I just have to do what I can…I won't let it beat me. [T01.1 (patient)]
For carers, watching the continued deterioration and acknowledging the significant impact of the breathlessness, it was similarly frustrating. This was highlighted by a daughter watching her mother struggle while fighting to maintain her independence.
I mean the highlight of my mum's week is going to Tesco's on a Saturday morning for her shopping…that is a real strain for her, she really struggles…but she is a fighter and she doesn't like to give up you know…she hides things well, and that can be a bit annoying sometimes, you can see yourself that she is struggling but she will keep going. [F06.2 (daughter)]
Professionals also acknowledged the significant impact and debility associated with the progressive nature of COPD and, in common with patients and carers, often expressed this in a language of functional and environmental limitations.
She doesn't get out any more, but I have no idea how she manages it because all those stairs are a problem and even just getting around the flat she is really breathless! [L03.1 (General Practitioner (GP))]
I mean any time she has an infection she really goes backwards very, very much and it takes her almost three months usually for her to get really a bit of her potential back. She knows she deteriorates every time she has an interval like that. [T03.1 (GP)]
Visibility and invisibility
When patients articulated what breathlessness meant for them, it was in a language of functional limitations and the accompanying frustration along with the insidious, almost imperceptible progress of breathlessness. Patients appear to have assumed this reduced level of activity as their new ‘normal’ pattern.
I mean I got a lovely routine worked out…I can move around to get my jobs done and then I sit down and you see 10 minutes after I sit down and have this (oxygen) back on again, I am as right as rain. It takes me longer to do things…I mean I do everything myself still! [F06.1 (patient)]
The visibility of the ever expanding role for informal carers was contrasted with the insidious way in which this had evolved. The demands and burdens had become an enmeshed ‘way of life’ for carers with their response making it invisible from the radar of support services.
Well yes it's true that not a lot of people understand really. “You say your husband's short of breath, oh that's a pity, that's a shame”. They don't really know the impact on your life…it is a big…big impact on your life. Even I didn't realise it. Things have got to get done...I just try to make life as comfortable for him as I can you know. [F02.1 (carer)]
For professionals, the issue of visibility was complex. They clearly saw the visible changes indicative of progressive COPD, often punctuated with acute exacerbations, though only one professional recalled a specific discussion with the patient about what the future may look like:
It is a relentlessly progressive problem…we have certainly spoken about it, and she certainly knows it is progressing and getting worse…it isn't going to get any better [F10.1 (GP)]
Visibility in terms of consultation frequency had significant resonance with professionals, and they noted that patients were typically at either end of the spectrum. Some professionals felt that patients with severe COPD ‘tend to be quite high users of our services’ while others thought they did not consult as much as they would expect.
I think given her physical health she is probably a relatively low consulter actually, which is interesting. [L03.1 (GP)]
It was recognised that consulting frequency may be indicative of wider social issues rather than specifically health-related problems, and that these may need more holistic evaluation.
I don't know that his chest bothers him quite as much as it has in the past! I think he feels quite socially isolated and I think to some extent that's why we get lots of phone calls from him in the practice, and we get lots of requests for visits which, taken at medical face value are not necessarily particularly valid. I think that…he's lacking close informal social support [L04.3 (GP)]
One professional observed that the repeated consultations and very visible requests for help from a particular patient prompted them to act despite limited evidence of an effective medical intervention.
His main problem was coping with disability and I think he just couldn't cope with it. He pressurised and pressurised and pressurised for something to be done and I think the indication was that he wanted something done rather than there was good evidence that it was going to help him [F02.1 (Consultant)]
Usage: frustration and a move to holistic care
Professionals recognised the progressive burden of COPD, and some expressed frustration at feeling unable to help.
You do hit a brick wall at the end when there isn't really anything that you can do other than trying to keep symptoms as few as possible [F10.1 (GP)]
Well he is quite severely depressed and he just wants to die [T08.1 (nurse)]
Others seem to have subtly changed the focus of care from disease-orientated medical intervention to holistic symptom-driven care.
Probably just to improve his quality of life at home…it is difficult…to try and control his pain or make him a bit more asymptomatic if we can [F01.1 (nurse)]
I look at it from a holistic point of view and it is not COPD that I am treating it is a patient I am treating. [T03.1 (GP)]
Interventions addressing the consequences of advancing disease
Meaning: markers of disability.
These specific, often ‘one-off’ interventions have wider meaning within a holistic assessment of disability, which extends their significance in breadth (as indicators of global reduction in functioning) and over time (as symptomatic of ongoing problems). Some healthcare professionals articulated this with examples of how a specific event (moving the bed downstairs) was symptomatic of general deterioration and required other support (provision of commode).
I mean he is just deteriorating—I wouldn't say fairly quickly but over the four years I have known him, or five years, quite dramatically… he has moved his bedroom downstairs so I have got him a commode and a urinal [T01.1 (Nurse)]
Visibility: visible, but needs to be noticed.
Interventions may be self-initiated by patients or carers or initiated by professionals. Some (such as moving a bed downstairs, deciding not to book a holiday or accepting help for a task) may be very visible to patients and carers but go completely undetected by professionals.
I have accepted the fact that I can't go on holiday…it was a walking holiday for us. It annoys me when people say “are you never getting fed up sitting in the house all the time, you never go away on holiday”…they don't seem to understand, it is impossible…I don't want to go abroad…I'm not capable of doing it! [F06.1 (patient)]
By contrast, confinement to one's house has significant existential meaning for patients, and is potentially a visible event as a palpable consequence of advancing disease.
You just have to accept that you are a prisoner in your own home…prisoner in your own mind [T06.1 (patient)]
Hospital admission is also a highly visible event for patient, carer and professional. Its significance for patients provoked polarised attitudes: some patients trying to avoid it as a last resort and others acknowledging it as a clinical necessity.
Well I've got to feel really bad before I go into hospital, I try and stay at home as much as possible…Even the last time I didn't want to go but I didn't get a choice, they said I was going and that was it! [L03.4 (patient)]
No, I try and stay clear of hospitals…Well at my age, hospital is the last stop T01.1 (patient)
The challenge with any event that is a single occurrence or omission is that it may, in itself, not be very significant for the professional or patient. However, the underlying pattern/trend of which it is a symptom may be highly significant, and have more meaning for all parties, for example, more frequent hospital admissions, being ‘labelled’ as housebound and needing home visits rather than being expected to attend the GP surgery.
He has been in hospital a number of times, more so in the last year really…he was a ‘revolving door admission’ [F02.2 (nurse)]
They've got me down as housebound so they come and see me now [T07.2 (patient)]
Usefulness
The usefulness of identifying these events lies in recognising that they are indicative of wider issues of disease progression that impact on patient, carer and home environment as well as general functioning. Patients clearly articulated how interventions no matter how small, for example, being given a walking stick, having made a ‘big difference’ in terms of functional ability.
I am getting a shower fitted. I will be going onto slip-on shoes because bending down…just the simple thing like; I have trouble getting up and down stairs, simple thing like a stick, that has made a big difference getting up—I get up to the top of the stairs and I don't have to sit down [T01.2 (patient)]
The need for one home adaptation is thus indicative of a bigger question, suitability of the home environment, and could be a trigger to alert professionals to this broader need.
Exemplar events that might be used to trigger a holistic needs assessment
Within the two broad categories, we identified eight ‘candidate’ events which we assessed for their suitability to act as potential triggers with reference to their meaning, visibility and usability. We considered the candidate events in terms of significance to patients, carers and professionals (eg, hospital admissions), their frequency of occurrence (eg, home adaptations), and how they resonated across healthcare systems and processes (eg, consultation requests in terms of frequency and location). This allowed us to evaluate the potential of the candidate triggers (see table 4).
Candidate events as potential triggers
Discussion
Summary of the findings
The substantial and increasing burden of disease, while apparent (and meaningful) to patients, carers and professionals, was often rendered invisible because of ‘normalisation’ of the slowly progressive disability. Recognition of changing patterns of care could increase visibility, but there was frustration—or sometimes nihilism—about the usefulness of interventions. Interventions addressing the consequences of advancing disease were more specific and potentially more visible though may only occur sporadically. Their use is twofold: acting as a marker for global debility but also acting as a prompt for professionals to see the more holistic needs of the patient with COPD.
Strengths and limitations
A strength of the study is the large dataset, exploring the narratives of patients, their informal carers and professionals about living with COPD collected with serial interviews over 18 months.32 Although the original aim was to explore the story of COPD and the services provided rather than specifically to explore events that might trigger a holistic needs assessment, the concept of ‘triggers’ emerged from the original analysis, and was implicit in achieving an understanding of the key events in the COPD narrative.23 The narrative methodology facilitated the accounts that were cognisant of, and true to, the participant's voice: ‘in their terms, in their language, and in their emotions. It reveals how the phenomenon is experienced by ordinary people’.33
The coding for the analysis on triggers was undertaken by a researcher (DC) who did not undertake the original interviews or have access to audio recordings, however, the original researcher (MK) had significant input into the data analysis triangulating her knowledge and reflections from the original research. Additionally, regular discussion within our multidisciplinary team contributed to a balanced interpretation of the data.
Although participants represented a broad range of demography, they may not fully represent the diversity of people with very severe COPD. All the interviews took place in Scotland, and the findings may not be directly applicable to other geographical settings, though the adaptation of palliative care services originally designed for cancer to meet the needs of people with non-malignant diseases appears to be a universal approach.7 ,9
Interpretation with reference to other literature
The meaning of triggers within current service delivery
Attempts to identify a transition point to palliative care are not congruent with the narrative of how COPD is experienced by patients, their carers and professionals involved in the delivery of care. The supportive care needs of people with severe COPD are well described in the literature,34 ,35 but the dilemma and challenge for the current healthcare system is whether they are sufficiently visible to alert professionals to the need to intervene . The findings from this study, suggests that awareness of certain key events can have meaning beyond their specific significance as they point to wider, on-going functional limitations within the narrative recall of people with COPD. Recognising triggers and detecting unspoken needs could facilitate concurrent provision of palliative and supportive care within the on-going routine management of the condition.
This approach offers an opportunity to facilitate holistic assessments of needs, as COPD is clearly (but paradoxically invisibly) progressing and exerting increasing burden on individuals and their carers. This would acknowledge the medical management in the disease trajectory while affirming life within its multiple dimensions (physical, psychological, social and spiritual), centring on coordination and continuity of care, with the clear focus on the ‘need’ identified, and not on time or prognosis.35
Triggers—making the ‘needs’ visible to professionals
The difficulties experienced by individuals with COPD, and their carers, as well as the challenges for professionals involved in their care, echo the findings in previous studies.4 ,5 ,36 ,37 In common with Giacomini et al and Habraken et al38 patients adapt to their debility and are often ‘silent’ about their situation, instead adapting to the new norms imposed by their condition, Infrequent consultations despite their advancing burden of disease add to the invisibility. An approach that renders these potentially invisible needs more visible to professionals may thus prove very useful. We have identified events that traverse the COPD disease trajectory which could potentially act as triggers stimulating the professionals to enquire about the wider holistic impact of the disease. The concept of triggers facilitating a holistic needs assessment broadens the understanding of the impact of the disease from the single presenting problem (eg, the request for a disability parking permit) to making visible the impact of the increasing mobility problems on physical, psychological social and spiritual aspects of the patients’ life and, importantly, stimulating interventions that have functional benefit for patients (such as a walking stick and other mobility aids).
The use of triggers
The visible ‘roller-coaster’-like disease trajectory of COPD22 coupled with the functional limitations that it forces,39 is again echoed by this study in that multiple domains (physical, psychological and social) may be affected simultaneously. The usefulness in recognising when a patient has advanced disease can be very helpful in directing care that is more supportive and palliative in its approach. Professionals, while acknowledging the progressive burden of COPD displayed a degree of professional nihilism and inactivity rather than proactively recognising the gear change in terms of disease and goals of care, which could have prompted a more needs-based approach that embraces supportive and palliative care. The social isolation that ensues from being housebound may be a factor that limits individuals from accessing the health and social care that could help them.17
This study raises the possibility that, rather than suffering from the ‘prognostic paralysis’ attributed to the unpredictable clinical condition of COPD,21 ,22 the identification of trigger events could have significant use in terms of offering an alternative to the difficulty in trying to identify an elusive transition point to an end-of-life phase. The usefulness of this approach, however, will be determined by whether professionals from diverse clinical and social backgrounds recognise, and then act on a triggering event. This will require integrated care as the wider holistic assessment may not be the responsibility of the person identifying the trigger. Other approaches might be to establish proactive searching for triggers (eg, using structured reviews, protocols or templates).
Conclusions and implications
Within the illness narrative of COPD, certain events punctuate and traverse the disease trajectory and cross multiprofessional boundaries of care. They can be a function of advancing disease or a supportive intervention addressing the consequences of advancing disease. In themselves, the events have meaning to patients and carers that resonate with the progressive nature of COPD, can oscillate between appearing invisible to professionals albeit very visible to patients and carers, but importantly have use if recognised by the healthcare system and used to trigger the delivery of appropriate services. To achieve this use, services will need to promote health and social care integration, and a clear process of ensuring holistic assessment when a trigger is detected.
Acknowledgments
We are grateful to Sr Janet Winter, Sr Colette Lamb and Sr Anne Aitken who undertook the initial clinical assessments, and to Marie Pitkethly, Colette Fulton and June McGill from Scottish Primary Care Research Network who helped with recruitment. Susan Buckingham provided administrative support, and Dr David Chinn assisted with coordination of the project within the work of the Primary Palliative Care Research Group. The members of the Lay Advisory Group, recruited by Ms Wendy Halley from the local British Lung Foundation ‘Breathe-Easy’ groups, worked with us throughout the study.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Files in this Data Supplement:
- Data supplement 1 - Online supplement
Footnotes
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Contributors HP initiated the idea for the study and led the development of the protocol, securing of funding, study administration, data analysis, interpretation of results and writing of the paper. MK undertook all the data collection. DC undertook the data analysis reported in this paper. All authors had full access to all the data, and were involved in interpretation of the data. DC wrote the initial draft of the paper, to which all the authors contributed. HP and MK are study guarantors.
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Funding The study was funded by the Chief Scientist's Office of the Scottish Government. DC received funds from the Bernard Sunley Foundation Charitable Trust. HP is supported by a Primary Care Research Career Award from the Chief Scientist's Office of the Scottish Government.
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Competing interestst All authors have completed the Unified Competing Interests form at http://www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare that DC, JB, MK, DO and HP have no relationships with any companies that might have an interest in the submitted work in the previous 3 years; their spouses, partners, or children have no financial relationships that may be relevant to the submitted work; and DC, JB, MK, DO and HP have no non-financial interests that may be relevant to the submitted work
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Ethics approval Ethic approval was provided by the Multicentre Research Ethics Committee for Scotland (B) and governance approval was obtained from NHS Lothian, NHS Tayside and NHS Forth Valley. All participants gave informed consent prior to taking part.
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Provenance and peer review Not commissioned; externally peer reviewed.