**10. COPD and smoking: The meanings of a 'self-inflicted' disease**

In developing countries COPD is most often related to exposure to cooking fires. In a small group of people, an inherited alpha-1 antitrypsin deficiency can lead to early onset COPD. For the vast majority of people in the western world, however, COPD develops as a direct result of cigarette smoking (GOLD, 2010). Up to half of all smokers will die from a tobacco related disease (World Health Organisation, 2011). Whilst some manage to give up smoking easily when confronted with a diagnosis, many people continue to smoke. If the issue of smoking is to be dealt with collaboratively, clinicians need some insight into the meanings of smoking for the addicted person.

People with COPD are stigmatised by the self-inflicted nature of their disorder (Johnson et al., 2007). They experience enormous guilt and shame that may cause them to deny smoking as the cause of breathlessness, to hide their symptoms and to delay their engagement with medical services (Gullick & Stainton, 2006, Arne et al., 2007, Robinson, 2005, Earnest, 2002). Smokers have described reduced access to services because they either fear the judgement of

romanticism or eroticism of the moment. Whilst for many couples sex becomes less important, other forms of intimate physical contact is also avoided so that simple loving gestures such as cuddling or kissing may be lost to the caregiving spouse. Carer Claire, (55yrs) explained, *"you get used to not having those sort of things. You get used to being…not* 

Much of the caring literature on COPD focuses on female spouses. However, where both men and women are participants there appears to be a difference in caring styles and responses to caring. Women carers, in particular, take on a micro-management approach, arranging medical appointments and scrutinising diet, medication and exercise compliance and this differs from the more passive and delegatory style of male carers. Women try to play down the ineffectiveness of the sick person by secretly completing heavier jobs or slowing their pace whilst walking. They look for opportunities to promote a sense of effectiveness by leaving available the achievable jobs around the house, and only assisting with body care where it is absolutely necessary. Liz described her approach with her brother, Andy: *"I made every effort so that he didn't see a lot of the things that I did, so that he didn't know that he was incapable of doing it"* (Gullick, 2008). Women try to protect others in the family from seeing how bad things are. There is a sense of wifely duty reported, with women determined to 'walk the road' with their husband until the end. They can't imagine life without their partners after giving such intense care for so long. Women caregivers

There are a number of unmet needs amongst family carers in COPD, including the desire for better support with physical care and symptom control, and more useful information about the course of the illness (Currow et al., 2008, Bergs, 2002). Women carers are often too proud to ask for help from other family members (Bergs, 2002), whereas male carers more happily enlist outside help. Because of the intensity of carer engagement in COPD homemanagement, health professionals must seek the insights of carers during the patient assessment process, and educate and involve them when introducing new therapies. Carers may be the champions of patient motivation, but they are also known to actively eliminate

In developing countries COPD is most often related to exposure to cooking fires. In a small group of people, an inherited alpha-1 antitrypsin deficiency can lead to early onset COPD. For the vast majority of people in the western world, however, COPD develops as a direct result of cigarette smoking (GOLD, 2010). Up to half of all smokers will die from a tobacco related disease (World Health Organisation, 2011). Whilst some manage to give up smoking easily when confronted with a diagnosis, many people continue to smoke. If the issue of smoking is to be dealt with collaboratively, clinicians need some insight into the meanings

People with COPD are stigmatised by the self-inflicted nature of their disorder (Johnson et al., 2007). They experience enormous guilt and shame that may cause them to deny smoking as the cause of breathlessness, to hide their symptoms and to delay their engagement with medical services (Gullick & Stainton, 2006, Arne et al., 2007, Robinson, 2005, Earnest, 2002). Smokers have described reduced access to services because they either fear the judgement of

ignore their own health needs and become sad and worn out (Bergs, 2002).

treatment strategies they see as unnecessary or harmful (Boyle, 2009a).

of smoking for the addicted person.

**10. COPD and smoking: The meanings of a 'self-inflicted' disease** 

*touched"* (Gullick, 2008).

health professionals or because of the actual attitudes of health professionals (Johnson et al., 2007, Burrows & Carlislea, 2010, O'Neill, 2002). For example, current smoking is a contraindication for many elective surgical procedures, including lung volume reduction procedures for emphysema. People are known to have been excluded on this basis without receiving the smoking cessation support that could facilitate their access to such interventions (Gullick & Stainton, 2006). Smokers are less likely to have visited a doctor in the past year (Fisher & Hill, 1990), and smoking is associated with non-adherence to pulmonary rehabilitation (Young et al., 1999).

The context of self-infliction may create an underlying anger and resentment amongst family members, particularly where family have not struggled with an addiction of their own. This anger may make the caring burden harder to accept, but may also be intermingled with guilt over these emotions (Boyle, 2009b, Gullick & Stainton, 2006). Gary (38 yrs) explains of his father: "*They can hardly drag themselves across the room, but they'll still smoke. It makes it tough for families, you're doing everything you can, but you feel, 'What's the use of doing it if he's still smoking?' He tries to blame different things… infection in his lungs… exercise… which is so idiotic. If you had a tape, and … let him hear himself he'd probably go "Oh… Silly!"*

Those who accept the causative role of smoking in their illness experience regret and anger for their past inability to stop (O'Shea et al., 2007). However, only a small proportion of people with COPD attribute cigarettes as the primary cause of their lung disease (Hansen et al., 2007). In a large, early survey of older smokers with or without COPD, 47% didn't think quitting would improve their health and 45% did not believe smoking was harming them (Fisher & Hill, 1990). The fact that there may be COPD amongst other family members is usually explained away as a family predisposition rather than a shared family smoking addiction. Numerous studies demonstrate the widespread denial of smoking as the main cause of breathlessness. Rather, patients attribute occupational exposure, ageing, lack of fitness and 'bad luck' as major contributors (Wilson et al., 2007, Hansen et al., 2007, Burrows & Carlislea, 2010, Gullick & Stainton, 2006). The study of Boyle (2009b) demonstrated that spouses are also inclined to find explanations for the illness that externalise the responsibility from their partners to others. Knowing other smokers who do not have COPD reinforces their beliefs.

The self-talk around the impact of smoking sometimes extends from denial of harm to positive physical, social and psychological benefits (Schofield et al., 2007, Osman & Hyland, 2005). Some research participants report that smoking makes them feel better and eases their breathing and others recall shared social experiences around smoking with affection. The issue of the pure enjoyment of smoking to the addicted individual cannot be ignored. Cigarettes have been described as a 'best friend', providing comfort and companionship (Lindqvist & Hallberg, 2010). Research participant Terry recalls and craves the sensation of smoking: *"I enjoyed smoking, and even now… I'd love a cigarette. My son … goes outside and has a smoke. I say 'Sit in here and I can smell it.' I want the smell of his smoke."* (Gullick & Stainton, 2006).

Smoking is widely utilised tool for stress reduction. It is common for people who have succeeded in smoking cessation to later relapse due to extreme stress or bereavement (Schofield et al., 2007, Burrows & Carlislea, 2010, Gullick & Stainton, 2006). The findings that cessation does not automatically deliver better well-being adds to the problem. All ex-

Psychosocial Dimensions of COPD for the Patient and Family 165

recommended, it must be noted that there is a strong dose-response association between the intensity of smoking cessation counselling and its effectiveness. Programs that provide person-to-person contact such as face-to-face individual or group counselling or telephone counselling have demonstrated their consistent effectiveness, and effectiveness increases

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* 

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'

COPD is an imposing illness in its effects on normal body functioning, daily management of the body and the home environment and on the lives of family members who give support. People find strategies around 'conscious management of self' to counter the impact of the unpredictability of the disease. Many of these strategies can be found across the literature of other chronic illnesses. These strategies include conscious control of emotions, comparing

with treatment intensity (Anderson et al., 2002).

*ended up working on him to save his life in the garage*."(Gullick, 2008).

amongst those individuals (Bailey, 2001, Leidy & Haase, 1999) .

**12. Emotional coping strategies in COPD** 

**11. Living with crises** 

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

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 denial around smoking is central to supporting cessation attempts.

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 addiction.

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 attempts succeeded for longer.

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 recommended, it must be noted that there is a strong dose-response association between the intensity of smoking cessation counselling and its effectiveness. Programs that provide person-to-person contact such as face-to-face individual or group counselling or telephone counselling have demonstrated their consistent effectiveness, and effectiveness increases with treatment intensity (Anderson et al., 2002).
