**13. The impact of pulmonary rehabilitation for the patient and family**

Pulmonary rehabilitation is a valuable treatment option in chronic lung disease and is directed towards reversing the downward spiral of disability. People with COPD tend to use their body within the limits of worsening breathlessness so that they gradually decrease their body's activity. Patricia confided: *"They say you should go out for a walk, but I just can't be bothered because I just get too tired. You know, to me it's not worth it".*

Pulmonary rehabilitation programmes aim to reduce symptoms and disability and to reduce the person's reliance on acute health care systems by improving their understanding of the disease and encouraging active involvement and self-management. Current clinical practice guidelines (Ries et al., 2007) advise a multidisciplinary team approach, individualised patient assessment and the setting of realistic, patient-centred goals. A well-rounded rehabilitation program pays attention to the psychological, emotional and social dimensions of the patient experience, whilst trying to optimise the person's physical function by monitoring best-practice medical therapy.

Programmes usually offer a mixture of upper and lower body strength and aerobic exercise and expose the person to 'safe' breathlessness. Education sessions are an important component and typically discuss use of puffers and spacers, management of exacerbations and panic attacks, access to services and benefits, psychosocial support and understanding of Advanced Care Directives and No Resuscitation orders (Milne et al., 2009, Wilson et al., 2007). The duration and intensity of pulmonary rehabilitation programmes seem to impact on outcomes. People with mild to moderate COPD may see benefits from short to medium term participation, whilst people with severe COPD do best with programmes of at least six

oneself to others worse off and learning to 'go with the flow' and make the best of unpredictable symptoms (Gullick & Stainton, 2008, Seamark et al., 2004, Cicutto et al., 2004). For some people, religious faith and spirituality provide an important emotional support that can reduce feelings of powerlessness (Leidy & Haase, 1999, Bergs, 2002, Milne et al., 2009, Seamark et al., 2004, Boyle, 2009b). Coming to a point of acceptance of the disease is named by many, but elegantly articulated by Lindqvist & Hallberg (2010) who describe the process of embodying and making a relationship with the disease. This requires a conscious replacement of the previously known life structure with a new, adapted one. This allows a determination of a reframed identity and normality that includes COPD. Patricia explains *"I've just got to learn to live with it. I call it 'me and my friend'*." Part of this acceptance lies in finding different foundations upon which to build hope; from cure to coping; from old dreams to new, realistic goals; and by discovering hope in the 'rewards of the moment' (Milne et al., 2009). People find simple and meaningful pleasure in realising skills, in having a good day, in being able to achieve a walk in the park or a shopping trip or in remembering past experiences with affection (Milne et al., 2009, Ek & Ternestet, 2008, Seamark et al.,

Perhaps the most significant recognition for both the carers and people with COPD is of their family as 'the best thing in life' (Gullick & Stainton, 2008). Family is not only a practical support structure, but a reason for surviving and enduring, and through children and grandchildren, embodies an important source of meaningful connectivity and joy (Leidy &

Pulmonary rehabilitation is a valuable treatment option in chronic lung disease and is directed towards reversing the downward spiral of disability. People with COPD tend to use their body within the limits of worsening breathlessness so that they gradually decrease their body's activity. Patricia confided: *"They say you should go out for a walk, but I just can't be* 

Pulmonary rehabilitation programmes aim to reduce symptoms and disability and to reduce the person's reliance on acute health care systems by improving their understanding of the disease and encouraging active involvement and self-management. Current clinical practice guidelines (Ries et al., 2007) advise a multidisciplinary team approach, individualised patient assessment and the setting of realistic, patient-centred goals. A well-rounded rehabilitation program pays attention to the psychological, emotional and social dimensions of the patient experience, whilst trying to optimise the person's physical function by

Programmes usually offer a mixture of upper and lower body strength and aerobic exercise and expose the person to 'safe' breathlessness. Education sessions are an important component and typically discuss use of puffers and spacers, management of exacerbations and panic attacks, access to services and benefits, psychosocial support and understanding of Advanced Care Directives and No Resuscitation orders (Milne et al., 2009, Wilson et al., 2007). The duration and intensity of pulmonary rehabilitation programmes seem to impact on outcomes. People with mild to moderate COPD may see benefits from short to medium term participation, whilst people with severe COPD do best with programmes of at least six

**13. The impact of pulmonary rehabilitation for the patient and family** 

Haase, 1999, Cicutto et al., 2004, Bergs, 2002, Barnett, 2004).

*bothered because I just get too tired. You know, to me it's not worth it".*

monitoring best-practice medical therapy.

2004).

months (Salman et al., 2003). The physical effectiveness gains also appear to be tied to the frequency of sessions per week (Gullick, 2008).

Having a specific COPD class means participants are empathetic towards others with symptoms of breathlessness and sputum production, and so are less self-conscious about their bodies' unpredictable behaviours (Gullick, 2008, Arnold et al., 2006). Under supervision, people become more comfortable exerting their body and are less likely to become panicked by exertional dyspnoea (Williams et al., 2010). Chris learned to manage his panic through the classes: *"The most helpful was avoiding panic attacks… It changed my outlook… I probably looked at it from the aspect 'Well, Bugger it! I can do these things' and I'd have a go at whatever it might be."* The increased sense of disease control due to greater confidence with managing medications and breathing techniques leads to a reduced likelihood of presentation to hospital (Camp et al., 2000).

Perceived physical gains include improved muscle strength, balance and mobility, reduced breathlessness and fatigue, and an improvement in joint mobility and pain management for those with musculoskeletal comorbidities. The result is that daily tasks are more achievable and require less pacing to complete (O'Shea et al., 2007, Gullick, 2008). Pulmonary rehabilitation has led to improvements in health related quality of life even where no significant improvement in lung function is demonstrated (Haave et al., 2007, Camp et al., 2000). This is in part, due to the reduction in social isolation and improved opportunities for expression of 'self' (Gullick, 2008, Toms & Harrison, 2002); patients describe feelings of enhanced well-being and hope (Milne et al., 2009, O'Shea et al., 2007), have higher self-esteem and mood (Arnold et al., 2006) and, following rehabilitation, are more likely to talk about their abilities rather than their limitations (Williams et al., 2010). Pulmonary rehabilitation can lead to a change in physical appearance and in turn, body image, and creates a sense of pride, satisfaction and achievement (O'Shea et al., 2007).

The intrinsic motivation of the person with COPD is important in determining the most successful approach to exercise training. Home-based programs may not be so successful for people who live alone or who do not have high internal levels of motivation. The notion of locus of control (Rotter, 1966) is a useful construct to predict those who may be most successful. People with a higher internal locus of control are more likely to seek information about their circumstances. They perceive a greater power to influence events through their own activities and behaviours and are more likely to believe that their labours will be successful. Those with a lower internal locus of control tend to see events as influenced by their environment, powerful others or fate. People with COPD who describe a higher intrinsic drive demonstrate more active engagement with rehabilitation and seem more successful with continuing on a home-based maintenance routine. Petra had severe COPD, but was carrying on a home-based exercise program more than a year after her initial rehabilitation: *"I have a walker… I only have to look at that and I'm at it. Never, ever will I fail! But I have two days off … Wednesdays comes my cleaning lady… Sunday… I entertain… So all the other days, that's exercise. That's like going to a job"* (Gullick, 2008). Those whose motivation is linked to exercising with others are less likely to benefit from a home-based rehabilitation (Milne et al., 2009). Jim (60 yrs) found maintaining a homebased program challenging: *"It's pretty right what they say – 'In a group you'll do it', whereas a lot of times you'll put it off at home."*

Psychosocial Dimensions of COPD for the Patient and Family 169

explained of her husband Jim after EBV insertion, *"He can dig in his garden…he's got a lovely veggie garden at the moment. There's lots of things he wouldn't have been able to do had he not had it done"*. Claire, (52 yrs) describes her husband Sam's regaining of self after LVRS: *"It was important for all of us to get back what he wanted; his mobility, his freedom, his right to choose what he wants... It was a chance for Sam to continue being Sam, and the surgery achieved that. He could* 

End-of-life planning in COPD is an important concept that allows goal-setting for patients and families, and facilitates a peaceful and dignified death. Specialist referral to palliative care services, in combination with a partnership approach with patients and families, allows the person to retain control over aspects of the experience of dying in the context of an

One of the great difficulties of planning the timing of end-of-life discussions is the uncertain disease trajectory in chronic respiratory conditions. COPD has not only an insidious onset, but also, an unchartable end-stage. We know that compared to patients with lung cancer, COPD patients have more Emergency Department admissions, more anxiety & depression, and report a lower quality of life. Compared to cancer patients, financial support comes later in the disease process and patients feel in greater need of aids and appliances, and of information on services and benefits (Gore et al., 2000, Crawford, 2010). COPD patients are less likely to receive prognostic information, less likely to know they are dying, or know they are dying for less time and they are more likely than lung cancer patients to die in hospital. Relatives of COPD patients are less likely to be present at the time of death,

Many General Practitioners (GPs) may not think about COPD as a terminal disease and so may not consider a palliative management plan (Halliwell et al., 2004). They do not tend to talk about what dying may be like or how long that may take (Curtis et al., 2004). The recently revised Initiative on Chronic Obstructive Pulmonary Disease guidelines (GOLD, 2010) gives brief mention of end-of-life discussions and advance directives, yet gives no

A nurse participant in the study of Crawford (2010) described COPD patients as having *"nine lives… you see them sick and think they won't get through this and then they do."* This tendency for people to bounce back has led to practitioners considering how best to define the time for end-of-life discussions and interventions. For clinicians, the final phase of life may be suggested by an FEV1 less than 30% of predicted, frequent exacerbations and admissions to hospital, and the presence of right heart failure. The need for mechanical ventilation and long-term oxygen therapy dependence also signal serious disease (Halpin et al., 2008). However, such markers are not always reliable predictors of the terminal phase of COPD (Seneff et al., 1995). Patients may have their own interpretation of the time when treatment is no-longer worth the burden that continued life presents. Scenarios that include prolongation of inevitable death, dependence on machinery, functional and cognitive impairment, unmanageable symptoms and a burden on loved ones have been noted as

*go on being the same person that he was – he was able to continue being himself."* 

although, we know most would like to be present (Edmonds et al., 2001).

strategies for these considerations or for palliative management of COPD.

unacceptable by patients (Fried & Bradley, 2003).

**15. COPD at end-of-life** 

otherwise uncontrollable illness course.

Pulmonary Rehabilitation itself can foster subsequent patient empowerment and a higher internal locus of control by demonstrating to the participant, the positive effects of self monitoring and management of their clinical status (Cafarella & Frith, 2001). Whilst breathlessness is still a feature of the person's experience after rehabilitation, it is the change in the way breathlessness is perceived that is most important, resulting from increased confidence and a loss of fear of physical exertion. With an increased sense of control over breathing, people often find panic and anxiety are reduced or eliminated and they increase their activity levels as a result (Williams et al., 2010, O'Shea et al., 2007).
