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

168 Chronic Obstructive Pulmonary Disease – Current Concepts and Practice

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

**14. The impact of volume reduction interventions for the patient and family**  The major limitation to exercise tolerance, and therefore to functional performance in COPD, is dynamic hyperinflation (O'Donnell & Webb, 2008). Surgical procedures, such as Lung Volume Reduction Surgery (LVRS) and Endobronchial Valve Insertion (EBVTM) have expanded the therapeutic possibilities for people with emphysematous hyperinflation. The procedures aim to reduce the amount of space taken up by hyperinflated lung tissue to improve elastic recoil, and chest wall and diaphragm dynamics. LVRS is an invasive procedure that requires the resection of between 20-40% of the total volume of each lung. It is safest and most effective for people with an FEV1 greater than 20% of predicted and a heterogenous rather than diffuse pattern of emphysema (NETT, 2001). LVRS is not a firstline treatment, but should be considered where optimal medical management and pulmonary rehabilitation fails to improve the person's clinical status (Ries et al., 2005). LVRS is known to result in significant improvements in quality of life, exercise performance and lung function, and the best results occur where surgery is complemented with an extended

In response to the potential morbidity and mortality following the major surgical procedure of LVRS, minimally invasive alternatives have been developed, and these are usually targeted towards upper zone, heterogenous emphysema. To date, the most commonly utilised approach is to insert one or more one-way endobronchial valves (EVB) to allow air

Whilst some patients are known to benefit from this procedure, only a minority (these tend to be those with the most hyperinflation at baseline) experience long term improvements in lung function (Kotecha et al., 2011). This improvement comes at a cost of more frequent hemoptysis, pneumonia distal to the valves and more frequent exacerbations of COPD in the few months after valve implantation (Sciurba et al., 2010). These results are confirmed in the only qualitative study of lung volume reduction procedures to date, demonstrating sustained wellness amongst most of the LVRS participants in contrast to a gradual decline in effectiveness for those who had

Importantly, FEV1 as the hallmark of COPD measurement, frequently does not predict the person-centred outcomes of surgery (Gullick & Stainton, 2009, Leyenson et al., 2000, Moy et al., 1999). Patients and families who accept surgical intervention for COPD feel the need to 'take a chance' on a procedure, even if they perceive that to be high-risk decision. Whilst COPD leads to shrinking of the boundaries of the self, for some, undergoing a surgical intervention allows an increase in physical effectiveness and a regaining of self. Gail

to escape from hyperinflated zones and to prevent the return of air to those zones.

their activity levels as a result (Williams et al., 2010, O'Shea et al., 2007).

period of pulmonary rehabilitation (Criner et al., 1999).

endobronchial valve insertion (Gullick & Stainton, 2009).

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 otherwise uncontrollable illness course.

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

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 strategies for these considerations or for palliative management of COPD.

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 unacceptable by patients (Fried & Bradley, 2003).

Psychosocial Dimensions of COPD for the Patient and Family 171

One marker of the end-of life stage may be the point where maximal therapy no longer provides relief of symptoms. Symptoms in the last year of life are characterised by constant breathlessness, weakness and fatigue. Pain, insomnia, depression, anxiety and panic attacks also shape the patient experience at this stage (Elkington et al., 2005). This requires a change in priorities of care, with symptom management needing the greatest focus. For example, in late-stage disease opioids may be central to dealing with dyspnoea, dyspnoea-related anxiety and pain. Clinician concerns around respiratory depression may lead to the underutilisation of opoids (Halpin et al., 2008). This may require a change in our understanding of what is 'good' or 'safe' for patients at different stages of their illness

The COPD journey is a long and consuming one both for the person with the disease, and for the family carer. Whilst this may set up challenges for clinicians in understanding and supporting psychosocial concerns, it also creates possibilities for true management partnerships with our patients and their families. If we embrace these possibilities we may achieve real meaning in the care we provide, and we are more likely to locate the humanity

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within our practice.

**16. References** 

Another complicating factor is that what is acceptable to patients may change over time as they adjust to severe illness and this may influence discussions and the willingness of GPs to initiate advance care planning (Halpin et al., 2008). It is typical of people to normalise their experience of even severe day-to-day symptoms and see themselves a sick only during acute exacerbations. This may be, in part, a coping strategy, but is also a result of the long illness trajectory. Whilst in cancer narratives, there is a definite beginning and developing plot to the 'cancer story', COPD is more likely to be insidious in its beginning and intertwined with the person's 'life story'. The unpredictability of exacerbations creates a chaotic component to the person's experience of illness, yet they may have a sense of relative wellness between these crises (Pinnock et al., 2011). Whilst people may feel that each acute exacerbation may be their last (Oliver, 2001) the threat of death recedes after a COPD crisis, or perhaps the threat of death is also normalised. The result is that death is less likely to be considered imminent and so wishes are rarely discussed with professional carers, friends or family (Pinnock et al., 2011). Where end-of-life discussions do occur, they may be poorly documented and so patient wishes may not be visible to family or other members of a multidisciplinary team (Crawford, 2010).

Having end-of-life discussions with COPD patients and families constitutes significant emotional work for clinicians and requires 'conscious emotional management'. This comes with experience as professionals learn to feel their way with an individual, and apply emotional intelligence and empathetic skills in their discussions (Crawford, 2010). Some ways to approach these difficult conversations include beginning discussions early in the disease course, using the uncertain disease trajectory to ease discussions and building a caring and respectful relationship with patients. It is useful to have a team approach with recognition of the collective responsibility of GPs, respiratory nurses and physicians to proactively identify and use opportunities to talk about prognosis (Halliwell et al., 2004).

The aim of good end-of-life discussions is to inform without removing hope, and to bring to the forefront the wishes of the patient and family. Research participant, Mary, described how she appreciated the honesty and sensitivity of the discussions after her husband had an ICU admission: *"The doctor did tell us the dangers of intubation …then when he was moved to ward said, 'You've come through this okay…Perhaps in the future it might happen again…You need to think what you want done, you and your family.' Just nicely … And I thought this is great".*

Discussing prognosis broadly in terms of a diagnostic population rather than directing it at the individual leaves room for hopeful possibilities. Physicians can foster hope by giving a 'commitment to non-abandonment', by addressing people's fears, such as fear of pain at end-of-life, and by having a management plan that addresses their changing situation (Curtis et al., 2008). Helping people to identify realistic goals and discussing their concerns about day-to-day living can also be useful (Clayton et al., 2005). The ideal is for a formal Advance Care Plan to be documented early. Again, the uncertain disease course of COPD makes this more complex, and means physicians are less comfortable with initiating such plans (Halpin et al., 2008). Fins et al (2005) point out that the process can be simplified by creating possibilities for revision of the plan, and by trying to understand and be true to the patient's core values whilst remaining flexible around practical details such as where they would prefer to die.

One marker of the end-of life stage may be the point where maximal therapy no longer provides relief of symptoms. Symptoms in the last year of life are characterised by constant breathlessness, weakness and fatigue. Pain, insomnia, depression, anxiety and panic attacks also shape the patient experience at this stage (Elkington et al., 2005). This requires a change in priorities of care, with symptom management needing the greatest focus. For example, in late-stage disease opioids may be central to dealing with dyspnoea, dyspnoea-related anxiety and pain. Clinician concerns around respiratory depression may lead to the underutilisation of opoids (Halpin et al., 2008). This may require a change in our understanding of what is 'good' or 'safe' for patients at different stages of their illness experience.

The COPD journey is a long and consuming one both for the person with the disease, and for the family carer. Whilst this may set up challenges for clinicians in understanding and supporting psychosocial concerns, it also creates possibilities for true management partnerships with our patients and their families. If we embrace these possibilities we may achieve real meaning in the care we provide, and we are more likely to locate the humanity within our practice.
