Written by Georgia Scott
Chronic Obstructive Pulmonary Disease (COPD) is a term used to describe chronic lung disease with progressive and irreversible airflow limitation such as chronic bronchitis and emphysema (Farrell & Dempsey, 2014). COPD is an incurable disease which generally shows decline over a period of years, but acute exacerbations can increase the disease progress and the variability amongst patients makes the disease extremely unpredictable and difficult to diagnose (Leyshon, 2012). The World Health Organisation (2016a) found that in 2012, 3 million people worldwide died of COPD and have predicted that COPD will become the third leading cause of death by the year 2030. In New Zealand alone, COPD is a common cause of hospitalisation and is now the fourth most common cause of death, following cancer, heart disease and stroke respectively (Health Navigator New Zealand, 2016). Although 50 percent of patients with COPD will die within two years of their first acute exacerbation of the illness which required hospitalisation, it is difficult to accurately predict when the patient will require palliative care (Scullion & Holmes, 2011).
25 percent of patients, die within years of their first hospital admission due to COPD. The end stage of this disease must be recognised to be able to implement timely palliative care. The progression of lung cancer is far easier recognised than COPD and as a result, many patients who suffer from COPD often have limited support with medical professionals cautious to diagnose the end stage of the disease (Trueman & Trueman, 2011). Palliative care is defined by the World Health Organisation (2016b) as an approach which improves the quality of life for patients associated with life-threatening disease or illness, by relieving and preventing suffering through early identification, thorough assessment and treatment of symptoms. Barnett (2008) outlines key principles underpinning palliative care for patients with end stage COPD, which identifies that Registered Nurses must focus on quality of life and symptom control, a holistic approach to care, care which primarily includes the family of the patient, appropriate and sensitive communication and respect for the patient’s own autonomy. Scullion & Holmes (2011) state that COPD mortality is under recognised and therefore the management of the disease in the palliative phase is poor. With varying periods of stability mixed with sometimes sudden acute exacerbations, the disease can be incredibly difficult to manage, therefore, I believe that better informed nursing input, is essential for patients suffering with the disease. Through the literature, a number of nursing implementations have been suggested to be the most effective in the management of COPD in the end stage of the disease and are discussed in this review.
For this assignment, I chose to review the literature that was available regarding end stage COPD to discover what best nursing interventions can be implemented while caring for a patient in the palliative phase to provide more comfortable and consistent care. There was a vast amount of literature available within search databases such as CINHAL, PubMed and ProQuest which discussed caring for patients in the end stage of COPD, which were published mostly by nurses who are experts in the field of respiratory disorders. While the literature focused mainly on research completed in Europe, there were similarities in the nursing practice that I have been exposed to which I found applicable to the high rates of COPD treated in New Zealand. There were many themes that were repetitively shown in the literature, mostly regarding implementations nurses could provide as assistance through the disease process. The major implementations that I will focus on in this literature review include; providing appropriate palliative care alongside the patients’ medical team, and having appropriate communication skills to support patients to make informed decisions about their care and non-pharmacological symptom control measures. Although the literature discusses these themes in many contexts, in this literature review I will focus specifically on these implementations being provided in the end stage or palliative phase of the disease and in secondary care settings such as hospitals, hospice or rest homes in comparison to community based care.
Improving the process of implementing timely and appropriate palliative care for patients with end stage COPD, alongside the medical team, is an important nursing intervention. The literature suggests that patients with end stage COPD are less likely to be subjected to appropriate palliative care, in comparison to those suffering from lung cancer (Iley, 2012). Scullion & Holmes (2011) also support this view by stating that patients with COPD are not only less likely to receive palliative care in the end stage of the disease, but also receive less supportive care than those with cancer, not only because of the uncertainty of the disease trajectory and the reluctance to diagnose the end stage, but also public and professional attitudes towards the disease. Barnett (2012) reports of a survey completed by the National Council for Palliative Care and the British Thoracic Society which found that just 42 percent of patients with COPD were provided with arrangements for end of life care.
Identifying the terminal phase of the disease can be difficult but the literature suggests that there are some clinical indicators that may be able to assist identifying the end stage of the disease process and therefore the need for palliative care to be implemented. Barnett (2012) suggests that the following indicators could suggest the requirement for further management of COPD; history of recurrent acute exacerbations and frequent hospital admissions, low body mass index suggesting weight loss and increased physical exertion, significant other co-morbidities, severe breathlessness at rest, taking maximal pharmacological therapy and/or using continual oxygen therapy and inability of carrying out normal activities of living. Leyshon (2012) also maintains that indicators can be used to assist in the process of providing palliative care for patients with COPD with similar criteria. The Gold Standard Framework criteria for patients with COPD includes at least two of the following indicators; the disease assessed to be severe, recurrent hospital admissions, fulfilling long term oxygen therapy criteria, shortness of breath after 100 meters of exertion or being house bound due to breathlessness, signs and symptoms of right sided heart failure or other co-morbidities and therapy of systemic corticosteroids for more than six months in the past 12 months (Leyshon, 2012).
By the use of criteria, similar to those discussed in the above literature, there would be a more streamlined process of care for patients with end stage COPD and the establishment of the palliative care phase. Hardy, Smart, Scanlan & Rodgers (2014) estimate that up to 40 percent of COPD patients have symptoms of depression as well as 34 percent showing symptoms of anxiety, which are common co-morbidities in patients with end-stage COPD and decreased support and a lack of appropriate palliative care may be a consequence of this. These co-morbidities are frequently missed or not treated appropriately and is an important aspect to consider in the provision of palliative care services (Leyshon, 2012) not just towards the end of life, but also while managing acute symptoms associated with severe COPD.
Another implementation that nursing staff can use to assist patients who are suffering from COPD is using appropriate communication skills to support them and their families to make informed choices about their healthcare. If healthcare professionals were not as reluctant to discuss end of life care issues with COPD patients, they will be more likely to receive more effective care (Iley, 2012). A National End of Life Care Survey stated that around 69 percent of patients with end stage COPD die in hospital despite a large majority of them wanting to die at home (Iley, 2012) showing this lack of communication prevents patient’s wishes being established. Trueman & Trueman (2011) maintained that appropriate discussion of the palliative phase with COPD patients show clear benefits and give these patients a wide range of support and palliative services that are available to them. As well as being timely, these discussions should be structured in the most sensitive and appropriate manner resulting in more effective end of life planning (Barnett, 2012).
Literature published by Iley (2012) discusses how nurses must have necessary communication skills to convey information that is usually particularly sensitive when it comes to end of life planning. This is supported by Barnett (2009), who state that communication skills are vital in the care of any patient with any chronic condition to ensure that they are receiving the right support and care as well as developing an appropriate and trusting therapeutic relationship between the nurse and the patient. Advance care planning is an initiative that nurses can use to discuss with patients their own views of their disease and consider what types of treatment they would like to receive in the last period of their life, especially when the patient may not be physically able to convey their own wishes for their treatment (Advance Care Planning, 2011).
A known barrier to advanced care planning is poor communication so it is essential that nurses are able to have sensitive communication and be able to discuss broadly treatment options and support available (Iley, 2012). Barnett (2012) also discusses end of life planning with patients with COPD and introduces a six-step end of life pathway model that can be tailored specifically to supporting patients and their families which was created by the National Health Service in England. This includes appropriate discussions with patients and their family, through assessment and planning for the patient’s particular needs and then co-ordinating the requirements, delivering high quality of services in all settings, identifying the dying phase and understanding the patients preferred place of death and finally caring for and supporting family after the patient’s death. This model has been proven to ensure that advanced care planning is completed successfully which is essential for patients with COPD to enable more effective care (Barnett, 2012).
Lastly, another nursing intervention that is commonly discussed throughout the literature is the implementation of non-pharmacological symptom control measures. There are a variety of pharmacological agents that can be used to manage symptoms often associated with end stage COPD such as opioids, oxygen therapy, and a variety of inhaled medications (Barnett, 2009), but there are also many nurse lead interventions that can be used alongside regular prescribed medication. Barnett (2008) also supports the use of non-pharmacological interventions as the use of medication alone may not always be sufficient in relieving breathlessness in many cases of end stage COPD. Nurse lead education regarding breathing control and positioning can be an effective way to relieve breathlessness as well as reducing the effort it takes to breathe and conserve essential energy.
A double blind reviewed study by Goodridge, Duggleby, Gjevre & Rennie (2008) states that one of the biggest challenges for patients with end stage COPD was adequate management of symptoms, the feeling of ‘struggling’ was a term used to describe breathlessness during this period. Barnett (2008) describes how patients who suffer from breathlessness generally overuse their accessory muscles to assist with breathing which tend to tire easily, therefore, education must be provided on how to effectively use abdominal breathing and to control breathing through pursed lips. Leyshon (2012) describes how pursed lip breathing decreases air trapping and airway collapse and positioning of the body, by leaning forward and slightly supporting their weight with arms or upper body can significantly reduce distress, as well as reducing the mechanical effort that is required to breathe for patients with COPD.
Breathlessness can result in significant psychological distress for patients with end stage COPD, managing this successfully will not only decrease the progression of the disease but also the co-existence of anxiety and depression (Leyshon, 2012). While breathlessness is one of the most concerning symptoms for patients with end stage COPD, there are other non-pharmacological methods to manage a wide range of symptoms from cough, sputum and dry mouth, to fatigue, anxiety and depression. Barnett (2012) discusses how the use of positioning and hydration can help to prevent viscous sputum and relieving an irritating cough as well as sucking on ice cubes regularly to prevent a dry mouth. Scullion & Holmes (2011) conclude that anxiety and depression can affect patients with COPD and emphasise that these symptoms should be recognised and managed effectively to reduce the effect on the disease progression. A qualitative study conducted by Hardy et al. (2014) outlines how 94 percent of patients who suffer from anxiety or depressive symptoms felt that discussing these issues in depth with health professionals made them feel more confident in managing these symptoms. While antidepressant medication may be appropriate, non-pharmacological methods in combination with pharmacological therapy are underused and coping strategies, relaxation techniques, counselling and cognitive behavioural therapy are all important interventions that may attempt to not only relieve depressive symptoms but also help to slow the progression of COPD itself (Barnett, 2012).
The literature suggests that proficient nursing interventions must be implemented to assist patients who are suffering from end stage COPD as well as supporting their families. A lack of provision of timely palliative care for COPD patients can be associated with a poorer quality of life, an increase in mental health conditions and becoming more house bound, even though the symptoms COPD patients suffer from are similar to those with lung cancer (Barnett, 2012). Gore, Brophy & Greenstone (2000) found from qualitative research through quality of life tools studying 50 patients with end stage COPD and 50 patients with lung cancer that those with COPD had significantly worse capability to complete activities of daily living as well as physical, social and psychological functioning than those with lung cancer due to a lack of appropriate palliative support and education.
Having criteria across the profession to diagnose the end stage of COPD and establish what level of care should be provided allows a standard of care to be created not only to benefit patients suffering from the disease but also health professionals who have contact with patients for timely palliative care implementation. The care needs of a patient with end stage COPD are complex, especially as they enter the palliative phase and providing non-pharmacological symptom management alongside the use of conventional medication is an essential addition to their regime and can slow further deterioration of the disease (Barnett, 2012). One major implication for patients with COPD who aren’t receiving the most appropriate care is a significant increase in mental health conditions. Patients with COPD have been proven to have less quality of life than those with lung cancer while at the same time being offered less palliative care. The burden on the health system is increased significantly due to mental health conditions and the increase in palliative care provision can assist patients to address mental health needs and reduce the burden of this co-morbidity (Barnett, 2008). If nursing staff are better educated of these factors, patient safety and quality of care will be enhanced, effectively leading to better outcomes for these patients and their families.
While the disease progression of COPD is difficult to predict, I would recommend that there is improved access to palliative care services for those with COPD and they should be aware of what is available for them individually from the onset of diagnosis. High quality end of life care is essential in enhancing the care of the patient with COPD and should be provided in all settings (Barnett, 2012). There are many reasons why palliative care is not as well implemented in patients with COPD and these need to be addressed, by removing the reluctance to discuss end of life issues, as well as better establishing the trajectory of the disease and having a good awareness of what services are available to patients within the end stage of the disease (Young & Rocker, 2009). While palliative care has generally been understood to be implemented at the very end of life, it is common for palliative care services to be established while the patient is still receiving treatment and it may be useful to manage severe symptoms such as breathlessness or pain as well as provide necessary support from Registered Nurses and the rest of the multi-disciplinary team (Ward, Donnelly, Cooper-Taylor & Cooper-Taylor, 2014).
I would also recommend that Registered Nurses are more aware of what non-pharmacological measures can be used to relieve the severe symptoms experienced by COPD patients. While prescribed medications are essential for the relief of breathlessness and other co-morbidities associated with COPD, interventions such as positioning and energy conservation may make a noticeable difference in the quality of life for the patient (Leyshon, 2012). If Registered Nurses are up to date with the most available research, they will be more aware of how to manage difficult symptoms in conjunction with the multidisciplinary team to provide support in a way that is most appropriate and reduce the conflicting methods of care amongst health professionals. Mental health issues such as depression and anxiety are widespread within the population of patients suffering with end stage COPD so I believe that more needs to be done to address the co-morbidity for these patients. Some of the most recent research completed by Dury (2016) identifies that the treatment of mental health conditions in patients with COPD will not only improve the functional ability and quality of life of the patients, but will also reduce the social burden and costs of the condition on the health system as untreated depression can not only affect the COPD diagnosis but also increase physical disability, health care use and morbidity.
In conclusion, improving symptom management, quality of life and access to palliative care services for patients with COPD requires a holistic approach from the entire multidisciplinary team, but nursing staff who have a significant amount of patient contact have an important role to implement these interventions. Recognising not only the physical aspects of the patient’s needs but also the psychological and social needs, such as supporting their family and assisting to make advance care plans are also important components of care. Ongoing support is crucial for patients as they reach the end stage of COPD and the findings in the literature support the need for the management of the condition to provide the best outcomes not only for the patient, but also for the family members, to relieve suffering, breathlessness and fear in the last stage of their life.
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