A clinical assessment by a respiratory nurse established eligibility, indicators of severity, and markers known to be associated with poor prognosis.7At each time point, patients nominated for interview an informal carer (for example, a family member, friend, or neighbour), if they had one, and a key health or social care professional whom they regarded as important to their care at that time, thereby creating “interview sets.” The person(s) nominated could differ at different time points.Our previous studies suggested a sample of 16-20 interview sets would be sufficient to reach data saturation.20Informed written consent was obtained from all patients at the beginning of the study and reviewed verbally before each interview.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.Globally, long term conditions such as chronic obstructive pulmonary disease (COPD) are responsible for an increasing proportion of deaths.1 Cancer based palliative care services, predicated on an ability to predict a terminal phase of disease,2 3 are being extended to encompass people dying with non-malignant disease.4 5 6 Prognostic indicators have been developed to aid identification of people “at risk of dying,” whose physical, psychological, social, and spiritual needs can be assessed and their care planned.2 7 There is concern, however, that the slow physical decline of patients with COPD, which is punctuated by potentially serious but unpredictable disease exacerbations, may lead to prevarication rather than provision of anticipatory care.8About half of patients discharged after a hospital admission for COPD will die within two years.9 Markers such as severity of disease, poor nutritional status, comorbid heart disease, depression, impaired quality of life, and older age have all been shown to be associated with an overall poor prognosis.9 10 Accurate predictions of life expectancy for individual patients with COPD, however, remain extremely difficult.7 11 This difficulty with prognosis is compounded by a tendency for doctors who are familiar with patients to overestimate survival.12 The only condition where prognosis is less accurate is dementia.11People with very severe COPD have a well recognised burden of disabling physical symptoms (especially breathlessness), compounded by comorbidity, psychological distress, and social isolation.13 14 15 16 17 Despite these issues, the needs of these patients are typically poorly addressed, and many patients have limited access to specialist palliative care services.13 14 The consultation on a strategy for services for COPD in England18 and the standards of care for COPD in Scotland19—which advocate adopting a lifelong approach to preventing, diagnosing, and providing care for people with COPD—acknowledge this deficiency and prioritise access to improved end of life care for those “sick enough to die.”To inform current deliberations on how best to provide care for people living and dying with COPD, we undertook an in-depth inquiry seeking to understand the end of life needs of affected patients and their informal and professional carers. Ethical approval was obtained from the Multicentre Research Ethics Committee for Scotland (B), and governance approval was obtained from NHS Lothian, NHS Tayside, and NHS Forth Valley.This narrative portrays illness as an opportunity to learn and improve, and is often found in celebrity accounts.This is the least heard narrative because “lived chaos” cannot be told.Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.Results Eleven patients died during the study period.
The interviews with individual patients, informal carers, and professional carers were coded separately and then analysed: () as integrated “patient sets,” “informal carer sets,” and “professional carer sets.” Comparing and contrasting across and within these data sets highlighted emerging themes and, importantly, also divergence of perspectives.20All transcripts were coded by MK (assisted by the study administrator), using a thematic narrative approach,23 reflecting the research questions and themes raised by the participants.
We used categories informed by sociological theory on health and illness, such as Bury’s work on biographical disruption (see web appendix 2 on bmj.com).24 Frank’s typology of illness narratives was used to categorise patients’ narratives into three types: restitution, quest, or chaos (box 2).25 Restitution narratives are satisfactory stories of illness and recovery.
Quest narratives tell stories of determined action and significant events that led to understanding of an illness, a search for cure, adaptation to disability, or campaigning to raise awareness or better care for the condition.
By contrast, chaos narratives appear to be a disjointed series of events within which neither the narrator who is living within the story, nor the listener, can discern a clear purpose or direction.
In this narrative the patient uses the illness experience as an opportunity to embark on a personal quest; for example, to adjust to life with illness or to improve care and support for people with a particular condition.
Longitudinal qualitative research using multi-perspective, serial interviews offers advantages over the more usual single “snapshot” qualitative techniques in understanding patients’ and family carers’ evolving and dynamic experience of illness (box 1).20 21 In this study, we invited patients and their nominated informal and professional carers to take part in up to four interviews at 6-9 month intervals.