**11. Living with crises**

164 Chronic Obstructive Pulmonary Disease – Current Concepts and Practice

smokers in the study of Burrows & Carlislea (2010) described feeling worse after quitting due to symptom exacerbation or weight gain. This was the case for Petra after her successful cessation attempt: *"I was under the impression if I stopped smoking I would get better, or I'd stay the same. And I thought, 'I'll give them up immediately' which I did, straight away … and I didn't get any better, I felt as though I was getting worse".* Even clinicians are unable to give reassurance of disease reversal, with slowing of COPD progression the best outcome of cessation. The lack of conviction of smoking as the main cause of illness is profound in its

Smokers experience smoking as a "need of their taken-for-granted-body". In long-term smokers, the need to smoke is an embodied and automatic function that is reinforced by triggers of daily routine such as completion of a meal, having a cup of coffee or talking on the telephone (Gullick & Stainton, 2006). For smokers, this places smoking within a framework of ritual behaviour rather than addiction (Lindqvist & Hallberg, 2010). Whilst ever the immediate embodied rewards of smoking are stronger than the longer-term and more abstract possibility of future health gains, cessation success amongst long-term smokers is unlikely (Osman & Hyland, 2005). In the context of denial, merely providing education around harmful effects of smoking is equally unlikely to make a difference. As disability progresses, for the person to continue to smoke whilst accepting smoking as the cause of their illness means they are confronted with ideas of their own inherent foolishness, selfishness or weakness, leading to self-harm and burden to loved ones, and they find this idea of themselves unacceptable. That health professionals understand these meanings of

A US Clinical Practice Guideline for tobacco dependence (Fiore et al., 2000) proposes the acknowledgement of smoking addiction itself as a chronic disease. By presenting smoking in a disease framework, clinicians can move beyond the issue of patient accountability for cessation failure and create the permission to accept medical, psychological and social support. It may also reduce the anger and resentment of family members arising from the

A number of disease milestones can act as prompts to stop smoking including being confronted with a diagnosis, the threat of oxygen dependence and serious exacerbations leading to hospital admission. Patient stories frequently link periods of heavy smoking with sudden and life-threatening health events and this may strengthen the person's resolve to stop. Taking the opportunity to communicate the 'right words at the right time' during a period of perceived vulnerability can be a precipitant for the person's eventual decision for cessation (Gullick & Stainton, 2006). West & Sohal (2006) describe this as 'motivational tension', a point at which even small triggers may lead to an unplanned quit attempt, and supportive treatments may be most effective. In their survey of almost 2000 past and current smokers, nearly half the reported attempts at quitting were unplanned and these unplanned

The approach clinicians take to smoking advice is important. It is known that smokers will resent 'being told what to do', and need to feel that they have reached the decision for their own reasons (Burrows & Carlislea, 2010). If clinicians seek a partnership with the patient in managing the chronic illness of smoking addiction then this may sit more comfortably in the guilt/shame milieu of smoking experience. Whilst a didactic approach to discussions is not

influence on smoking cessation failure (Hansen et al., 2007).

denial around smoking is central to supporting cessation attempts.

addiction.

attempts succeeded for longer.

COPD is often experienced as relatively quiet times interrupted by episodes of serious illness. Episodic crises create the essence of uncertainty that defines the experience of COPD (Boyle, 2009a, Oliver, 2001, Gruffyd-Jones et al., 2007). These episodes are often described by patients and carers as near-death experiences that leave people with a constant sense of their own possible death. This has been described as 'living in the proximity of death' (Lindqvist and Hallberg 2010) and from a Heideggerian perspective, 'being-towards-death' (Gullick, 2008).

Crises may be the result of panic attacks, acute chest infections, allergic reactions or acute emergencies related to comorbidities. The crisis events begin with dyspnoea that does not respond to the usual self-management strategies. Initially, people may feel the need to be on their own during acute breathlessness, sensing that others can't help bring dyspnoea under control and that there is a need to focus internally on breathing and maintaining calm (Fraser 2006). Although the onset of exacerbation is recognised with panic and dread (Leidy, 2008), people are often reluctant to seek help, hoping things will improve and hospital admission will be avoided. Professional assistance is sought only after people are convinced they can't self-manage the event (Gruffyd-Jones et al., 2007, Leidy & Haase, 1999, Bailey, 2001). Gary described his father Jack's frightening experience: *"… he got a bit worried and rang the ambulance and by the time they got there all his vital signs… were starting to break down… they ended up working on him to save his life in the garage*."(Gullick, 2008).

As respiratory distress increases and panic rises, people may change in appearance, may be unable to speak and may experience choking and loss of bladder or bowel control (Bailey, 2001, Gullick, 2008). These understandably terrifying events usually lead to emergency hospital admission. These crises are watershed events that mark a 'before' and 'after' in the person and family's life from which other events are then measured (Bailey, 2001). These crises underline life with COPD as uncertain and unpredictable and people fear each attack could be their last (Boyle, 2009a, Oliver, 2001). The experience reinforces the conviction of carers that they must closely monitor the person for early signs of deterioration, and this vigilance thereafter binds them emotionally and practically to the task of caring (Gullick, 2008). People will often develop emergency protocols that may define triggers for helpseeking and roles for family members that require 'understanding and trustworthiness' amongst those individuals (Bailey, 2001, Leidy & Haase, 1999) .
