Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.
Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.
Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.
Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.
Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a “way of life” rather than an “illness.” Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a “chaos narrative” of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.
Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
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This is a reprint of a paper that first appeared in BMJ 2011;342:doi:10.1136/bmj.d142
We are grateful to Janet Winter, Colette Lamb, and 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 David Chinn assisted with coordination of the project within the work of the Primary Palliative Care Research Group. We thank the members of the lay advisory group, recruited by Wendy Halley from the local British Lung Foundation Breathe Easy groups, who worked with us throughout the study, and Patrick White, Declan Cawley, and Tony Davison for their perceptive comments on our draft manuscript.
Funding This study was supported by the Chief Scientist's Office of the Scottish Government. HP is supported by a primary care research career award from the Chief Scientist's Office of the Scottish Government.
Competing interests All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.
Ethical approval Ethical 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. Informed written consent was obtained from all patients at the beginning of the study and reviewed verbally before each interview. Informal and professional carers identified by the patient were asked independently for their consent to participate.
Data sharing We do not have consent to share data.
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