When considering an affective symptom, such as breathlessness, the experience of the symptom is directly influenced by the individual's thoughts and feelings, as well as their physiology, as is also the case with pain. Therefore, providing compassionate, therapeutic care is of paramount importance to support individuals living with breathlessness. Better understanding of the components of delivering this care might provide much needed insight into supporting breathless patients.
Breathlessness is a common and distressing symptom in advanced disease, affecting almost all people living with chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD), as well as most people with chronic heart failure and advanced cancer (Solano et al, 2006). The community respiratory nurse specialist (CRNS) is well placed to support respiratory patients with what are often very challenging, distressing symptoms, throughout the disease process and, ultimately, to the end of life. However, the sustained witnessing of distress can cause burn out among nurses (Salyers et al, 2017), offers personal and professional challenges and affects the delivery of holistic, therapeutic care (Sawbridge, 2016). Emotional labour-a term encompassing the sacrifice nurses make of their personal thoughts and feelings to engage in therapeutic care with patients-is an under-researched role requirement within nursing (Gray, 2009). Seeking to understand CRNSs' experience of emotional labour in witnessing the distress of patients with breathlessness will address this important aspect of therapeutic care.
This paper aims to consider the lived experience of the CRNS supporting people with breathlessness from the angle of emotional labour. This is a significant aspect of the CRNS role, as to witness a patient with difficulty breathing, something so life-sustaining and fundamental to our survival, is to witness a person in acute distress. While this paper specifically addresses the CRNS role, breathlessness and emotional distress, it can be considered widely applicable. The issues discussed will be relevant to all nurses working to achieve holistic care for patients with other intractable symptoms. By evaluating the components of emotional labour, the impact on the nurse will be discussed, in addition to the consequences for the delivery of therapeutic nursing care. Better understanding of this role might enable delivery of support at a time when compassionate, patient-centred care is essential for those with breathlessness (Lovell et al, 2019).
How does the CRNS support patients with breathlessness?
The role of the CRNS is to maintain support for patients with respiratory disease, usually COPD and interstitial lung disease (ILD). Their support helps individuals to self-manage their disease and, where possible, remain in their own home. CRNSs help the patient to manage acute exacerbations, building supportive relationships to give practical guidance to both patients and their families. Severe breathlessness is challenging to experience and can be very difficult to witness (Booth et al, 2003; Hutchinson et al, 2018). Breathlessness is a poor prognostic indicator, and its unremitting nature can cause anxiety and depression for both patient and carer (Hutchinson et al, 2018). The CRNS often witnesses this increase in symptom burden manifesting in deteriorating breathlessness and a decrease in self-confidence, functional capacity and quality of life. Long after medical care is optimised, the patient remains distressed and living with refractory breathlessness. An experienced, skilled CRNS with advanced communication skills and an understanding of the components of breathlessness may be the crucial team member supporting the patient throughout their disease trajectory to the end of life.
The CRNS's role as part of the wider team
CRNSs work collaboratively with both primary and secondary care providers to support patients. Some teams have hospital in-reach to enable early discharge from hospital, and they may work with respiratory consultants in clinics and the community to facilitate specialist care delivery. They will liaise with and advise GPs and practice nurses around maintenance treatment options and symptom management to complement their care of the patient. At the end of life, they collaborate with district nurses and specialist palliative care nurses to advise on and deliver palliative and supportive care. They may support the delivery of pulmonary rehabilitation courses and will be present for their patient throughout the course of the illness, which, with a condition such as COPD, can be many years.
Implications of witnessing distress in the CRNS role
Booth and Johnson (2019) identified CRNSs as the health professional providing the most regular support and contact to patients who are breathless, as well as their families. This regular support enables nurses to address patients' breathlessness in terms of assessment and symptom management, and they often share relationships with patients that span months or years.
Supporting patients with distressing and difficult-to-treat symptoms can impact the nurse, whether this is acutely or over a long period of time. Grace and Vanheuvelen (2019) identified that health professionals who care for people with respiratory conditions experience high levels of psychological stress and burnout, which is more evident in higher-status healthcare workers (physicians and nurse practitioners). Relative to other workers, nurses interact more frequently with patients and their families, responding to their needs and listening to their concerns. However, understanding of why this should be particular to the respiratory field is not yet understood. This is something that the European Respiratory Society (ERS) has identified as a priority for research, to develop multidisciplinary respiratory care (Von Leupoldt et al, 2020). It is likely that high levels of psychological stress and burnout will be even more apparent in the post-COVID-19 environment, where all health professionals, including nurses, will witness grief and loss both personally and professionally, as acknowledged by Roberts et al (2021) in respiratory care and Graham (2020) more generally across the nursing workforce. Latimer et al (2017) identified that repeated exposure to the distress of others is associated with increased stress and burnout for nurses, often resulting in attrition. This distress was recognised by Salyers et al (2017) in their systematic quantitative meta-analysis, which examined the relationship between burnout and quality of care. They analysed 82 studies up until 2015 and found a consistently negative relationship between provider burnout (emotional exhaustion, depersonalisation and reduced personal accomplishment) and the quality (perceived quality and patient satisfaction) and safety of healthcare. Lower quality of clinical care included spending less time with patients and potentially putting them at risk of safety errors. This acknowledgement of the important connection between burnout and quality of care has implications for CRNSs (Salyers et al, 2017).
The potential for burnout due to witnessing prolonged distress is an important factor when considering the CRNS role in supporting people with breathlessness. When exposed to the distress of others, there is likely to be a personal emotional cost to the CRNS, which may then influence patient care (Salyers et al, 2017). Coping with the distress of others requires ‘emotional labour’: an aspect of caring recognised by James (1989). However, engaging with and witnessing the distress of others can also build trust and enable a closer relationship between the nurse and patient, which ensures the patient receives the best supportive care (Gray, 2009; Speakman, 2018). Therefore, it is an important, yet challenging, component in patient care that impacts the overall care delivered by the nurse, and should be explored.
Philosophical exploration of caring, bearing witness and vulnerability
Nurses make a unique contribution to patient care. The ubiquity of the term ‘care’ is both a strength and weakness, yet its meaning in nursing is quite variable. It applies not only in the practical sense (being with/helping), but also in being psychologically and emotionally present (Euswas and Chick, 1999). Eriksson (1997) distinguished among three perspectives: ‘caring nursing’, ‘nursing care’ and ‘nursing nursing’. Caring nursing is engaging with and caring for the patient without prejudice, and it focuses on need and suffering. Nursing care refers to specifically meeting the clinical needs of patients; this may be good ‘functional’ care, but it does not necessarily constitute caring. Finally, ‘nursing nursing’ refers to systematic planning of nursing care and can be administrative and technical. Reducing care in nursing in this way distinguishes aspects of the role within the process of care delivery. Sometimes, the nurse will choose to engage and be present; at other times, they will choose to be efficient and functional. The challenges of an increasingly scientific and technical approach to care can be a barrier to ‘caring nursing’, but Eriksson (1997) suggested that the various obstacles preventing nurses understanding their patients or providing care can be found in the nurse themselves. Exploring and understanding the reasons for these obstacles might enable more ‘caring nursing’ in practice.
Cody (2007) built on the idea of caring nursing, exploring the need for nurses to bear witness to patients' experiences of suffering. He suggested that to bear witness is to offer presence, with the nurse risking their own personal suffering. To bear witness is to attest the personal authenticity of the nurse, a willingness to stay humble and uphold the person's truth, affirming the patient's dignity. Bearing witness to suffering is a moral choice nurses make when caring for patients, yet Cody (2007) suggested that choosing not to bear witness and engage subjectively with the patient is an act of violation, where the nurse refuses to acknowledge the unique experience of the patient. Bearing witness to suffering, a component of caring nursing, can be demonstrated through simple comfort measures, attentive listening and small kindnesses, as well as building to larger-scale political and societal obligations.
Sellman (2005) and Carel (2009) explored the term ‘vulnerability’ to describe the lived experience of patients faced with disability and illness. The role of nurses to have ‘certain sorts of dispositions that are consistent with protection of … vulnerable people’ (Sellman, 2005: 8) demonstrates the call to emotional labour and means it is, therefore, imperative to mask any personal thoughts and feelings when nurses are with patients. Carel (2009) suggested that there is a cost for the nurse in witnessing the vulnerability of others, and they routinely attempt to limit their own vulnerability throughout the witnessing of pain and suffering. This puts the nurse in a unique position of vulnerability to the risks that such intense situations involve.
Emotional labour
These discussions of caring, bearing witness to suffering and vulnerability, alongside the integral components of holistic, compassionate care, enforce the need, rather than the choice, of nurses to engage in emotional labour in the delivery of therapeutic care. Emotional labour was first described by Hochschild (2012) as displaying work-appropriate emotions, which might sometimes be different from internal feelings or emotional state of the individual. Nurses work to reduce anxiety in the patient and display a sense of professionalism regardless of their own underlying emotions, often dealing with distress, tragedy, death and dying with an appearance of calm and neutrality. This supports Smith's (2012) acknowledgement of emotional labour as a role requirement in nursing. Nurses are rarely conscious of emotional labour as an aspect of their work, because it is bound up in gender and professional status (Erickson and Grove, 2008) and is an aspect rarely discussed (Sawbridge, 2016). This idea that caring is ‘women's work’ explains why skilled emotional management remains largely invisible, as explored in depth by James (1989). The complexity of the care environment where there are staff shortages, sick patients and pressured working environments can be barriers for all nurses to deliver caring nursing and engage emotionally. The cost of a loss of empathy and compassion was demonstrated in the Francis Report, examining the Mid Staffordshire case (Mid Staffordshire NHS Foundation Trust Public Inquiry, 2013). The focus of operational targets and financial balance over the provision of empathetic care resulting in devastating costs to patients and their families. Kerasidou's (2019) study acknowledged that empathy is often a cost when healthcare is driven by efficiency, because it takes time and resources to enable health workers to be motivated and perform their duties with compassion. Emotional labour is an invisible feature of care and, therefore, rarely taken into account in management practice (Smith, 2012). The impact of emotional labour, explored by Brighton et al (2018), depend on the self-efficacy, expectations, personal knowledge and perceived support of the individual. These will determine the type of support they may require. This is echoed by McKinless (2020), who identified emotional resilience and emotional intelligence as key aspects of emotional labour in community nursing. She recommended coaching in these skills for nurses working in this service. While this may begin to address this integral aspect of care, it is the culture of the organisation that supports clinical supervision, ensures workloads are manageable and, with regard to emotional labour, ensures ‘not having the expectation everyone is ok’ (Brighton et al, 2019: 500).
Impact of bearing witness to distress on therapeutic care
The impact of emotional labour not only influences the wellbeing of the individual nurse but is also an important element in compassionate care for patients (Smith, 2012). Isabel Menzies's work in the 1960s identified a reductionist approach to nursing work, seen especially with an increasingly technical environment, with a task-orientated focus unconsciously protecting the nurse from emotional labour, creating the antithesis of compassionate care and coming at a cost to patients. Although care is now more patient centred and target driven, disease-focused care is often prioritised over holistic, empathetic care (Kerasidou, 2019). The role of the CRNS, focusing primarily on delivery of care to patients with respiratory disease, prioritises knowledge and skills within the specialism. Knowledge is focused on disease management and prevention (smoking cessation), as well as the specifics of oxygen therapy, noninvasive ventilation and a range of inhaled therapies. Although these aspects of the role were recognised as priorities for research by respiratory nurses in a recent Delphi study (Kelly et al, 2018), advanced communication skills enabling empathy and reflective practice are just as relevant in this specialism if they are to deliver caring nursing and should be equally prioritised.
Although it is clear that emotional labour can cause burnout or distress to the nurse, there is little known of its effects on therapeutic patient care. Gray (2009) recognised that engaging in emotional labour, the nurse helped patients ‘manage disclosures of a sensitive and emotional nature’ (p170), as well as that increased information sharing facilitated a democratic partnership with patients and their families. Angel and Vatne (2017) considered the vulnerability experienced through illness and dependency on others, but this vulnerability extends to the nurse in their engagement when caring for patients. Cody (2007) suggested that, in bearing witness, the nurse can transcend suffering with the patient, finding a deeper meaning of the experience, moving beyond and rising above with a sense of wholeness. This is not only validating for the patient, but it also allows the nurse to ‘move beyond what is not yet’ (p20). The experience of breathlessness inevitably results in feelings of vulnerability for patients due to the potential loss and threat for the present and future (Angel and Vatne, 2017). Like pain, breathlessness is a ‘total’ experience (Abernethy and Wheeler, 2008), directly influenced by the individual's thoughts and feelings, as well as bodily symptoms. The importance of providing compassionate, therapeutic care to support the individual through this experience is paramount. Better understanding of the components to delivering this care might provide much-needed insight into supporting breathless patients.
Progressing research in breathlessness
Living with COPD can become a way of life for patients. Rather than consciously living with a disease, these patients might accept a compromised quality of life and considerable suffering (Booth et al, 2003). Progress in breathlessness research mirrors pain research (Addison, 1984), considering the multiple factors that contribute to its experience as it is a complex clinical syndrome (Johnson et al, 2017). In identifying the complexity of the components contributing to pain (fear, emotion, loss, spiritual and existential distress), research has progressed in understanding the mechanisms and management of pain, challenging the assumption that pain is an inevitable part of dying. Understanding of the different approaches needed to treat acute and chronic pain have led to the benefits of holistic care being realised (Addison, 1984). Now reducing or eliminating pain is considered a realistic goal at the end of life.
In the same way, breathlessness has been considered an inevitable part of living and dying with respiratory disease (Oxley and McNaughton, 2016). However, there is a growing understanding of the mechanics of breathlessness interventions that can reduce the symptom burden and improve quality of life, challenging this assumption (Currow et al, 2013; Faull et al, 2018). Considerable research around interventions to support patients with breathlessness and improve outcomes does not translate into clinical practice, other than by specialist breathless intervention services. These services generally offer a model that combines respiratory and palliative care services, adopting a multiprofessional team approach. However, there are only a handful of such services across the UK, and most patients will not have access to a breathlessness intervention service (Booth and Johnson, 2019). Currow et al (2013) identified the need for a focus on future research to ensure that evidence-based non-pharmacological interventions are part of routine care. A supportive, therapeutic relationship established between nurse and patient as the burden of disease increases is greatly valued and can enable patients to manage their condition at home (Hutchinson et al, 2020).
Although the role of the CRNS is important for patients, little is known about nurses’ experience of caring long term for patients with breathlessness. The experience of nurses in more acute care of patients with breathlessness in intensive and end-of-life care settings in a hospice has been explored (Tarzian, 2000; Goodridge et al, 2012), where distress is witnessed for intense, but relatively short, periods of time. These studies clearly demonstrated the challenge nurses experience when caring for patients who experience continuing breathlessness in the final stages of their life. They described the challenge to stay present during suffering, because it evokes such a strong personal response in coming to terms with their own mortality. These descriptions suggested the cost of bearing witness to suffering, which will surely be similar to those involved in the long-term care of patients with breathlessness. Greater understanding of this experience will enable support for and strengthening of the professional skills of CRNSs, acknowledging the demands of this role. To facilitate the delivery of effective breathlessness management that becomes integral to care for all respiratory patients, the experience of the nurse, which is pivotal in the delivery of care, and should be part of this research.
Conclusion
Breathlessness leads to significant suffering for patients with COPD (Currow et al, 2013). Addressing this symptom in the face of immense suffering for the patient and distress for the carer (Johnson et al, 2014) can be challenging for nurses. This constitutes emotional labour, a role requirement and integral part of the culture of nursing care in the health service (Gray, 2009). While emotional labour can be challenging for nurses (Smith, 2012), it can inform interpersonal relationships and sustain the quality of nurse-patient care. Recognising its explicit value, rather than assuming it is inherent and part of the ‘natural’ caregiving qualities often assigned to women, allows greater understanding of this vital part of quality care within the NHS (Sawbridge, 2017). In the role of the CRNS, the joy and burden of caring are witnessed. While the role is autonomous, varied and important in providing continuity of care to respiratory patients and their families, the present challenges of staffing shortages and a global pandemic have highlighted the fact that nurses as human beings, need to preserve their own wellbeing (Graham et al, 2020). Greater awareness and research of the emotional costs of bearing witness to suffering and distress will limit personal detriment to nurses. It will also enhance patient experience at a time when compassionate care is vital in addressing a symptom as challenging as breathlessness.
KEY POINTS
- Breathlessness is a challenging and debilitating symptom for many people with respiratory conditions
- Community respiratory nurse specialists (CRNSs) support patients with complex symptom management throughout what is often a very long disease process
- Witnessing the suffering of patients due to breathlessness can cause distress to the nurse, which may inadvertently influence the care given
- Bearing witness to distress and vulnerability and caring and the consequent emotional labour are essential components of good nursing care
- Research on the experiences of CRNSs supporting patients who are breathless can to highlight opportunities and barriers for nurses to deliver therapeutic care while witnessing distress
CPD REFLECTIVE QUESTIONS
- How do you engage emotionally with patients and their families, even when they are distressed?
- What is your experience of delivering ‘nursing care’ when it is not ‘caring nursing’? How does this impact the patient and their family?
- How do you process the challenging experiences of bearing witness to distress?
- What form of clinical supervision do you have to support you and your team?