A patient is the most important person in our hospital. They are not an interruption to our work; they are the purpose of it. They are not an outsider in our hospital; they are a part of it. We are not doing a favour by serving them; they are doing us a favour by giving us an opportunity to do so.

(Adapted from Mahatma Gandhi)

16.1 Introduction

This chapter will consider the future evolvement of the clinical nurse specialist (CNS) role in cancer care. The chapter will commence with a brief overview of the emergence and development of the CNS role to provide a background to the current global context. The vision for the direction of travel of the CNS role will predominately focus on the clinical component of the CNS role; however, as the role is supported with leadership, education and other components, these important factors will be explored. The chapter will delineate some of these key principles related to the CNS role, including caring, knowledge, skills and the ability to respond to diverse needs to ensure greater inclusivity and fairness. Case studies from practice will be used to illustrate the continuing and central role of the CNS in advancing practice.

Today, the role of the CNS continues to grow, and the CNS is recognised as a key contributor, core to the delivery of quality nursing practice in cancer services. The first author of this chapter, Barry Quinn, has worked for over 30 years in cancer and palliative care as a specialist nurse, researcher, author and leader in a number of teaching hospitals in London, United Kingdom (UK) and is currently a senior lecturer at Queen’s University Belfast. The second author, Helen Kerr, is a senior lecturer at the School of Nursing and Midwifery, Queen’s University Belfast, with a clinical background in cancer and palliative care nursing.

Although the concept of nursing care has been present in most societies from ancient times, nursing as a profession has more recently developed in a range of global contexts over the last century. Since nursing was inducted as a profession in the early twentieth century, the profession has been developing in response to the changing needs of diverse populations. This has required leadership, adaptability and a range of innovations that adequately meet society’s changing needs. Nursing is reported to be one of the most trusted professions (International Council of Nurses (ICN) 2020a), evidencing the population’s perspectives of the nursing profession’s approach to these changing needs. In addition to these developments, nursing has evolved to be the profession with the greatest number of healthcare professionals, accounting for 59% of health professions with an estimated 27 million nurses globally (ICN 2020b).

One of the developments in the nursing profession relates to advancing nurses’ roles beyond initial registration (East et al. 2015). Advancing nursing practice is one of the profession’s approaches to meeting the changing healthcare needs of individuals, groups, communities and populations. One aspect of advanced nursing practice is the availability of advanced nursing roles, given the reported growing need for nurses working at an advanced level (Kleinpell et al. 2014), with one international study identifying 52 different advanced nursing roles in 26 countries (Heale and Buckley 2015). Bryant‐Lukosius and Martin‐Misener (2016) report that the CNS role is one of the two most common denominations of advanced practice nurse roles, along with the nurse practitioner. The ICN (2020c) state, ‘the CNS provides healthcare services based on advanced specialised expertise when caring for complex and vulnerable patients or populations. In addition, nurses in this capacity provide education and support for interdisciplinary staff and facilitate change and innovation in healthcare systems’ (p. 12).

Advanced practice nurse roles, including the CNS, contribute to better care for people, improved health for populations and lower healthcare costs (Bryant‐Lukosius and Martin‐Misener 2016). In cancer care, the CNS role is reported to enhance patient outcomes through improved symptom management, greater information provision, better psychological support, improved service coordination and increased patient satisfaction (Kerr et al. 2021). It has been argued that quality graduate education is fundamental to the success of advanced nurse practice roles (Bryant‐Lukosius and Martin‐Misener 2016), with a minimum educational requirement for the CNS role recommended as a master’s qualification (ICN 2020c). However, due to contextual variations across the globe, it is recognised that this may not be the standard across all countries.

16.2 The Role of Caring and the Clinical Nurse Specialist

The way nursing and, more specifically, nursing as a profession has been delivered and developed over time has changed (Quinn 2020a); however, the actual presence of nursing within societies has consistently played a role among ancient cultures and communities throughout the world (ICN 2020a). The seeds of nursing and nursing practice can be seen in many of these ancient cultures, including within the First Nations of Africa, Canada, Australia and New Zealand. As nursing changed in response to each generation’s needs, nursing was acted out within different contexts, i.e. in response to wars across Europe and Asia, during times of plague and famine, and through the major religious communities who felt called to respond to the poor and to those in need (Quinn et al. 2021). Through the ground‐breaking work of individuals such as Mary Seacole and Florence Nightingale, nursing gradually began to be recognised as a profession, with a growing focus on health promotion and preventing illness (Thompson et al. 2020).

Within each of these historic and modern‐day developments, and at the heart of all nursing practice, is the ability to care for another person in need (Quinn 2017). Some years ago, Brykczynska (1997), in her book Caring: The Compassion and Wisdom of Nursing, suggested that to consider nursing without caring is similar to thinking of nursing without a soul. This ability to care continues to be a core aspect of the CNS role. Jean Watson (2005), in exploring the meaning of nursing, spoke of the central role of caring in nursing practice. Watson (2005) believed that it was through the caring relationship between the nurse and the patient (one in need) that healing took place, and both the nurse and the one being cared for were enriched. More recently, Johns (2004) linked the concept of care to easing the suffering of others as people faced advanced disease and the reality of death. Karlsson and Pennbrant (2020) suggest that it is through this caring relationship, paying attention and treating the individual as a person with respect, that nurses can support the person’s sense of well‐being and self‐worth. The concept of caring has been examined by numerous writers over the centuries and has recently been described as the ability to be actively present to someone in need, with a willingness to help and support (West and Chowla 2017) (Table 16.1).

The activity of caring requires the CNS to actively engage with the other by being fully present in all aspects of nursing care and practice. In the context of delivering expert and advanced nursing care, the CNS role models this long‐held notion at the heart of nursing of compassionate care while responding to current global, local and individual needs.

16.3 Developing Skills for Today and the Future

The ICN (2020c) clearly state that nurses working in specialist roles require a diverse range of skills enabling them to provide safe and competent person‐centred care with a strong base within nursing education. Each CNS uses a range of highly developed clinical and humanity‐based skills to respond to the spiritual, social, emotional and physical needs of those who, for a temporary or a permanent period, require the support of another (Table 16.2) (Johns 2004; Quinn 2020b). These skills are acted out in the daily practice of the CNS, who may be required to explain to a person living with cancer that their cancer has advanced despite undergoing cancer treatments, and gently and sensitively explain what this means for the person whilst maintaining hope. Closely aligned to this concept of humanity‐based practice is a CNS workforce that is highly skilled in a number of important elements of clinical nursing practice. These may be referred to as the four core pillars of the CNS role: nurses who can deliver evidence‐based expert nursing practice, who are able to teach and role‐model expert nursing practice and care for others, who are actively engaged in relevant research and forward planning of services, and who have the ability to lead others in the delivery of care (Quinn 2003; Quinn 2017; ICN 2020c).

However, for the CNS to continue working in this specialist role requires a high level of clinical expertise (Royal College of Nursing (RCN) 2018; ICN 2020c). Each CNS is required to demonstrate, maintain and update the competencies and agreed standards, which are reviewed in the light of global and national changes in health and social care (RCN 2018). This means every CNS must be committed to their ongoing learning and professional development. CNSs are required to provide leadership and insight in response to the global, social, political, economic and technological realities of health and social care needs (ICN 2020a).

16.4 Leadership

An important but sometimes overlooked component of the CNS role is the ability to use a combination of management and leadership skills in daily practice and interactions with others. While some CNSs may feel competent in using management skills to plan, ensure patient safety, support colleagues and deliver care, others may be more effective in using their skills to motivate and mentor colleagues, role‐model expert practice, provide leadership and promote a vision of what clinical nursing can be (Quinn 2017). While both sets of skills are central to all nurses in health and social care, working in the role of a CNS places them in an ideal position to promote leadership in all aspects of clinical practice and service delivery (Storey and Holti 2013). This requires the CNS to adapt to the changing nature of cancer treatments and the settings in which these treatments may be delivered.

People with cancer require a CNS who can articulate a vision of care and support that places the patient at the heart of any new and developing service, who is able to work with and influence the team in creating services that exclude no one, and who has the ability to plan for future needs. Govier and Nash (2009) suggest that nurses in these leadership positions have a responsibility to help create a caring environment for patients, families and colleagues. If staff feel supported and cared for, they too will be able to pass on that care and support to people living with cancer (Govier and Nash 2009). Recognising multiple demands, the CNS has an important advocacy role in ensuring that those in power provide the resources necessary to deliver care, listening to their colleagues’ needs and not allowing patient care to be diminished (Quinn 2017). This means the CNS has to be engaged with the decision‐making process, ensuring that they are at the decision‐making table, engaging with education providers and influencing regional and national agendas (RCN 2018). CNSs use their expert knowledge and skills to learn from those they care for, influence healthcare discussions and advocate for the needs of patients and their families, including guiding where resources might need to be allocated. Alongside this reality, the CNS needs to be compassionate, visible and credible; have the courage to influence change; and role‐model the importance of reflection in practice and self‐care (Table 16.3).

Although each CNS may have their preferred approach to leadership, influenced by their personal life and professional experiences, a variety of approaches and a willingness to adapt are required. In an emergency situation, the CNS working in an autocratic manner may reduce morbidity and prevent death, while being with someone who is receiving a new cancer diagnosis or facing death requires the approach of one who serves (Quinn 2020b). The notion of the serving leader, first described by Greenleaf (1970, 1997), is an approach that the CNS may find helpful in their goal to deliver care that focuses on the person (McCormack 2020). Similarly, Alimo‐Metcalfe and Alban‐Metcalfe (2008) describe a partnership approach, where the leader (the CNS), as a servant, ensures that the person living with cancer, their family and the wider team are invited to participate in treatment choice and care planning. The partnership approach corresponds well with the principle of good leadership as outlined in the National Health Service (NHS) Leadership Academy (Storey and Holti 2013) in the context of the UK. The CNS who is willing to serve and show empathy and compassion is crucial to improving the lives of those living with illness and advanced disease (Cornwell and Goodrich 2009; Quinn 2017).

With the focus on person‐centred care, the Department of Health (2013) reported that in the UK, the majority of people living with cancer had been given an opportunity to talk about their needs and had an individualised plan of care, one based on a holistic response to the person’s need. In contrast, Guldhav et al. (2017) and Hill‐Kayser et al. (2011) found that many older people with cancer were excluded from taking part in their care planning and treatment options. Each CNS has an important leadership role within the broader team delivering the person’s care, working to ensure that the person’s needs are heard, assessed, addressed, responded to and monitored (Guldhav et al. 2017). The Department of Health report (2013) stated that to implement a more holistic needs assessment and care planning approach, members of the cancer team, including the CNS, need to have more confidence in their leadership and clinical practice, develop better communication skills and help to create a collaborative teamworking culture, placing the person in need at the centre (Department of Health 2013).

Effective leadership requires thinking differently to deliver care that is inclusive of all and exclusive of none. This involves engaging with people whose voices are not always heard in healthcare settings, including those with dementia, mental health conditions and learning disabilities; older people; lesbian, gay, bisexual and transgender people; refugees; and ethnic and religious minorities.

16.5 Equality, Diversity and Inclusion in the Role of the Clinical Nurse Specialist

The ability of each CNS to continually adapt their practice is fundamental to the growing and changing needs of a diverse and often transient population. This includes both opportunities and challenges in delivering a fairer global health and social care system for all (ICN 2020a) (Table 16.4). In his book Falling Upwards, Reflecting on Spirituality and Getting Old, Rohr (2013) reminds the reader that it people who are on the edges of society or do not conform to what society might define as normal or acceptable often have the most to teach us. Yet he goes on to say that we, as a society, have a pattern of excluding such people from many aspects of life (Rohr 2013). This exclusion can also exist within cancer services and practices, where people can be judged consciously or unconsciously by their age (ageism), race (racism), gender (chauvinism), ability/disability, mental health, sexuality (homophobia), religion or cultural background. The CNS and, indeed, all those working in cancer services must be more mindful of creating services that include and do not exclude those who are perceived differently. Recent research has demonstrated that many people over 65 years living with cancer have not always been included in important conversations and decisions about their treatment and care plans. In some cases, people have been over‐treated with minimal benefits or, in some cases, have not been offered treatments that would have benefited them (Fitch et al. 2015; Noordman et al. 2017).

The Nursing and Midwifery Council (NMC 2021), the Royal College of Nursing (RCN 2018) and the General Medical Council (2022) of the UK, similar to other professional bodies globally, are committed to the idea that patients are people. Each person has a right to be treated fairly, with dignity and respect, regardless of their age, gender, ethnic origin, sexual preference, economic status or religious beliefs (or non‐beliefs). This means moving away from the notion of one size fits all to one that is person‐centred and at the heart of all good nursing practices. The focus requires the CNS to use their knowledge, expertise and leadership to create and deliver inclusive and adaptable services, ensure that people get fair access to health and social care, and ensure that justice is achieved. This requires the CNS taking a leading role, working with colleagues and services to challenge attitudes, cultures and activities that exclude others; working to ensure a more inclusive and integrated healthcare and social system and focusing on people with the greatest level of need to reduce the ongoing stark health inequalities that exist. This includes promoting and influencing the better commissioning of services that are respectful of diversity and inclusion. The following case study 1 provides an example of potential unconscious bias.