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The Royal Marsden School

Challenges in the holistic management of breathlessness for palliative lung cancer patients

By Lucy Denny and YiWen Hon
Sebastien Gabriel
Wed, 04/09/2019

The multitude of complex physical and psychological symptoms experienced by patients at the end of life can be vast and often distressing (Blinderman and Billings, 2015). The incidence for breathlessness for palliative care patients is 50-70%, with at least 90% of lung cancer patients suffering from this distressing and prolonged symptom (Thomas et al, 2011). Breathlessness, or dyspnoea, can be described along three dimensions: air hunger, effort of breathing, and chest tightness (Kloke and Cherny, 2015). However, as Parshall et al (2012) note, it is important to acknowledge not only the physical manifestations of breathlessness, but also the related psychological and social factors of anxiety, fear and isolation which negatively influence the patient’s experience and the choice of an appropriate management strategy. Research by Stowe and Wagland (2018) shows that the complex relationship between distress and breathlessness in lung cancer patients greatly impacts on quality of life and that the physical and psychological manifestations of breathlessness should be treated as a whole symptom experience. This multidimensional conception of breathlessness has been termed ‘total dyspnoea’ in the literature (Abernethy and Wheeler, 2008).

Due to the multidimensional nature of symptoms such as breathlessness in palliative patients, the use of clinical guidelines should integrate patient choice, evidence based practice, and local and national policy (Kredo et al, 2012). The use of symptom management guidelines in palliative care helps to reduce variation in treatments and enables the utilisation of a systematic approach for appropriate management and escalation (Van Beek et al, 2016). Researchers such as Thomas et al (2011) and Booth et al (2008) argue that guidelines combining pharmacological and non-pharmacological approaches, together with professional knowledge, are integral to achieving the effective management of breathlessness. In the UK, the NICE guideline for care of the dying includes information on palliation of breathlessness, which aims to reduce distressing side effects within a safe and dignified environment for patients and families (NICE, 2015). These guidelines have been commended by Ruegger et al (2015) for their emphasis on individual needs and wishes relating to end of life care. 

However, guidelines do have limitations. For example, Fearon et al (2018) is critical of NICE's reliance on quantitative data as the foundation for the evidence base, arguing that greater usage of qualitative evidence could further enrich their relevance and effectiveness. In addition to this, in the writing of guidelines, assumptions regarding the knowledge, economic resources, and ability to integrate guidelines amongst healthcare professionals are made; these can be variable across different clinical settings and must be considered (Gnant, 2013). Furthermore, it has been argued that some guidelines fail to acknowledge the potential for professional conflict, resource availability, and issues relating to organisational structure, which could negatively impact on the delivery of effective symptom management in palliative care (Scott and Guyatt, 2011). These issues complicate the management of breathlessness in the palliative lung cancer patient.

There has been some research into the effectiveness of pharmacological and non-pharmacological approaches to breathlessness for advanced stage lunch cancer patients, such as a Cochrane review by Barnes et al (2016) on the use of opioids in this context, and another review by Simon et al (2016) on the use of benzodiazepines. However, it has been argued that reviews like these do not adequately acknowledge the negative impact on quality of life, and other adverse side effects (Cabezón-Gutiérrez et al, 2016). Much of the research is quantitative in nature, whereas qualitative data analysis may be of value to provide a deeper understanding of the patient’s experience of ‘total dyspnoea’ as a multifaceted experience (Chittam, 2014). Non-pharmacological interventions such as breathing training (Johnson et al, 2015) and handheld fans (Galbraith et al, 2010; Puspawati et al, 2017) have also been shown to be effective. However, interventions such as these are reliant upon resource availability, staff education, and multidisciplinary team collaboration which due to the complexities of palliative care cannot always be assumed within clinical settings (Silbermann et al, 2013).

Multidisciplinary teams are a core element in contemporary healthcare and help to ensure optimal provision of holistic patient care and timely treatment delivery, particularly in the context of palliative lung cancer patients (Croke and El Sayed 2012; Taylor et al, 2010). Patients managed by multidisciplinary teams see higher rates of referral to palliative care, which suggests an increased focus on symptom control and quality of life than might otherwise be the case (Boxer et al, 2011). However, as Patkar (2011) and Soukup (2018) have argued, the multidisciplinary team can also pose challenges to holistic care, as excessive case loads, time constraints, and a lack of clear leadership may result in a reduced focus on patient-centred care and individual preferences. Therefore, although the multidisciplinary team can be an effective means of managing both the psychological and physical aspects of breathlessness in palliative lung cancer patients, this can vary depending on organisational context and should not be regarded as a solution in and of itself.

In conclusion, the importance of maintaining a holistic approach to managing palliative breathlessness is paramount to ensure that patients with life limiting illnesses feel empowered and are able to achieve the best quality of life possible. Breathlessness is a complex and challenging area of palliative symptom management with significant physical and psychological implications for patients and families. Guidelines, whilst helpful, can also be limiting in their approach. The value of various pharmacological and non-pharmacological approaches has been demonstrated yet further research would be beneficial to increase awareness of their value. The use of a multidisciplinary approach to breathlessness, despite challenges such as team working and resource availability, has the potential to positively impact on patient experience. 


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