Challenges for the clinical nurse specialist in uro-oncology care Abstract

Cancer is a complex illness that over the years has provoked much fear and speculation for patients, their relatives and health professionals. Emphasis has been placed on cancer management from the point of diagnosis, as well as treatments and their associated risks. As a result of increased technology and improved treatment modalities, more people are now surviving cancer and go on to live longer and healthier lives. While such an achievement is commendable, it places a significant strain on the healthcare economy. The Cancer Reform Strategy acknowledges that the management of cancers in the UK warrants clear definitive protocols and guidelines, to ensure a strategy that is capable of achieving the desired outcomes for those individuals who are affected by the disease. Integral to this objective is the multidisciplinary team, in which the role of the cancer nurse specialist is fundamental to achieving holistic patient outcomes. However, this article addresses the challenges of a uro-oncology clinical nurse specialist from a conceptual, as well as a personal, perspective. It focuses on the role that is specific to the management of patients who are diagnosed with urological cancers. Key words: Clinical nurse specialist ■ Breaking bad news ■ Communication ■ Uro-oncology ■ Survival ■ Psychological and psychosocial issues


t is estimated that every year around 255 000 people in the UK will be diagnosed with cancer and about 130 000 will die from the disease, making it the leading cause of mortality in people under the age of 75 (Department of Health (DH), 2007; House of Commons Committee of Public Accounts (HC), 2011; DH, 2012a; DH et al, 2013). Increased screening programmes and improved technologies has meant that prevalence in the diagnosis of new cancers has risen to record levels. Reportedly, 65% of adults who are diagnosed with cancer will be alive after 5  years (Ganz, 2005; Hewitt and Ganz, 2006; DH et al, 2010) while 10-year survival rates for certain cancers, i.e. prostate, have doubled over the past 30 years (increased from 21.0% in England and Wales in 1975 to a predicted 68.5% in 2007), and continue to increase (Cancer Research UK (CRUK), 2004; Kvale, 2007;

Beverley Anderson is Macmillan, Uro-Oncology Clinical Nurse Specialist, Epsom and St Helier University Hospitals NHS Trust, Surrey Accepted for publication: April 2014


Rachet et al, 2007; DH, 2007; HC, 2011; Coleman et al, 2011; CRUK, 2014). However, while some believe that increasing survival rates for those who are affected by cancer is a good thing, the resulting effects of treatments can be devastating on their quality of life and their personal perception of surviving the disease may be less positive. Furthermore, it cannot be ignored that survival creates a multitude of problems, of which psychological and psychosocial issues (Hewitt and Ganz, 2006; Frank-Stromborg and Johnson, 2008; Morgan, 2009; Leary and Oliver, 2010; Macmillan Cancer Support, 2011) and costs (Doyle, 2008; Trevatt and Leary, 2010; DH et al, 2013) are paramount. Oncology is defined as the branch of medicine that deals with cancers, including the study of their development, diagnosis, treatment and prevention (Northern Ireland Cancer Network, 2014). This discipline is highly regarded nursing specialty that, over the years, has witnessed many changes in its approach to practice. Perhaps the most important change of all is that cancer has moved from being a disease from which people die, to one with which they learn to live (Frank-Stromborg and Johnson, 2008; Haylock, 2008). Increases in new diagnoses of cancer and changes in approach to practice have consequently posed new challenges and opportunities for the nursing profession and have resulted in the creation of specialist nursing roles in every healthcare setting (Frank-Stromborg and Johnson, 2008). Since these nurses are a core component of the healthcare team in oncology care, the expectations are that they will be up-todate on current evidence-based guidelines to enable them to deliver optimum care to their patients (Haylock, 2008; Trevatt and Leary, 2008). Guidelines have been set for the management of all cancers in the UK, denoting specifications for each cancer type (National Institute for Health and Care Excellence (NICE), 2004; DH, 2007). The overall objective of this management is to ensure individuals are provided with appropriate support and representation during the cancer journey, from the point of diagnosis, throughout treatment and survival beyond the disease (DH, 2007; Macmillan Cancer Support, 2011). Paramount to achieving this objective are the multidisciplinary team and the clinical nurse specialist (CNS), i.e the urooncology CNS who is a pivotal member of this team (DH, 2007; Tarrant et al, 2008; HC, 2011; Vidall et al, 2011). This role encompasses several elements, including serving as key worker, which is vital in the breaking of bad news to patients on receipt of their diagnosis, and in the subsequent provision of information and support (McCulloch, 2004; Tarrant et al, 2008). This is an activity in which effective communication

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Beverley Anderson

British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 10

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URO-ONCOLOGY (NICE, 2008) is crucial, for patients, their families, and health professionals (Lusk, 2005; Bishop, 2006; Driscoll, 2007; Bor et al, 2009; Duff et al, 2009; Macmillan Cancer Support, 2011).

Defining the CNS’ role in cancer care The specialist nurse’s role evolved in the UK in the 1970s (Castledine, 2003) but, to a certain extent, still lacks a clear definition (Llahana, 2005; Farrell et al, 2011;Vidall et al, 2011). The role was first highlighted in the ‘Calman Hine report’ (Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales, 1995) where recommendations were made for the provision of cancer care with the explicit aim of improving the services received by newly diagnosed cancer patients.These recommendations were later reinforced in the NHS Cancer Plan (DH, 2000) in recognition of the increasing need to develop specialist cancer services. In cancer care, the prerequisite is that CNS’ are at graduate level, with the expectation of having a master’s degree (National Cancer Action Team (NCAT), 2010). Arguably, current reality does not reflect this expectation, with some practising CNS’ not yet achieving this educational standard (DH, 2010). Nevertheless, CNS’ are experts in clinical, evidence-based nursing practice within their specialty, and most practice autonomously in diagnosis and treatment, while working to promote patient health and wellbeing (Trevatt and Leary, 2008; 2010; Hewett and Ross, 2012). The role encompasses several components, including effective communication (NICE, 2008), responsibility for particular aspects of care and managing patients’ care pathway (Hamric et al, 2005), while delivering nurse-led services (Mais, 2006; Lewis et al, 2009; Lydon et al, 2009). Some CNS’ are involved in the pre-diagnosis stage (conducting holistic needs assessments, supporting patients in the trans-rectal ultrasound clinic on attendance for their prostate biopsy, performing flexible cystoscopies for non-muscle invasive bladder cancer) but, in this context, the primary focus is helping patients understand their disease and treatment options once a diagnosis has been confirmed, and offering emotional and psychosocial support while acting as the patient’s key worker in line with national guidance (DH, 2000; 2004; NICE, 2004; DH, 2007, NCAT, 2010; Vidall et al, 2011). A ‘key worker’ is defined as someone who, with the patient’s consent and agreement, plays a key role in coordinating patient care, promoting continuity, and ensuring the patient knows who to contact for information and support (NICE, 2004).

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Ongoing debate regarding cancer CNS role HC (2011) estimated that by 2030, the number of people living with cancer in England would double from 2 million to 4 million. Such acknowledgement had clearly highlighted the importance of specialist care and support, namely the cancer CNS, whose knowledge, experience, skills and expertise are vital to improving the patient’s cancer experience and quality-of-life outcomes. There is evidence to show that patients who are allocated a CNS, respond far more positively on a range of items related to information, choice and care, than those who are not (Macmillan Cancer Support, 2011; DH 2012b). A UK  survey exploring the experiences of men with prostate cancer found that specialist nurses were

British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 10 

ranked the highest by men, in terms of health professionals and helplines, for the provision of emotional support around the time of diagnosis and treatment decision-making (Prostate Cancer Charity, 2009). An earlier study by Tarrant et al (2008) found that patients who saw a specialist nurse had more positive experiences of receiving written information about tests, treatments, and sources of advice and support, and were more likely to say they made their treatment decision themselves. Two key aspects of the specialist nurse role were seen as unique; their availability to the patient, and their ability to liaise between the patient and the medical system. This involved first providing or reiterating information about diagnosis and treatment using language that was clearly understandable to the patient, and second, acting as an advocate for the patient to facilitate the care process. The study also noted that when patients did not see a specialist nurse, they experienced gaps in their care; in particular, a lack of someone with whom they could talk things over post diagnosis, and a lack of immediate access to advice and support over the course of their care. It is further recognised that CNS’ help to empower patients to self-manage their conditions leading to reduced costs for healthcare providers through hospital appointments, emergency admissions and consultant time (Leary and Oliver, 2010; HC, 2011). Despite the evident importance placed on the CNS in the management of cancer patients (DH, 2007; Haylock 2008; NICE, 2008; Tarrant et al, 2008, Prostate Cancer Charity, 2009; HC, 2011; Macmillan Cancer Support, 2011), they remain the subject of ongoing debate and controversy— disparities in expectations and performance and the costeffectiveness of these individuals have been meticulously scrutinised (Hill, 2006; Leary et al, 2008, DH, 2010; Dean, 2010; Handley, 2010). Such scrutiny appears to be the result of continuing scepticism about the specialist nurse’s role and substantive benefits it provides. It appears that when providing information, advice and emotional support, the specialist nurse’s role is often undervalued and is seen as ‘less tangible’ and a relative ‘luxury’, when compared with wardbased nurses (Tarrant et al, 2008). As specialist nurses attract a higher level of pay, there is a significant challenge to be faced in enlightening health service managers that they are a valuable resource and, consequently, they are easy targets in cost-saving exercises (Dean, 2010; Handley, 2010; Leary and Oliver, 2010). Previous evidence suggests that many people within the wider health service still do not understand the role’s diversity and the range and importance of the activities undertaken. The CNS role is not easily measurable within the current NHS  performance criteria, and it is difficult to quantify the aspects of the role (Handley, 2010). How does one measure listening to and comforting distraught patients and their relatives, and providing them with the necessary psychological support and reassurance? Clearly, evidence that supports the importance of the CNS role needs to be improved, particularly in reviewing the manner in which patient feedback is captured and disseminated to healthcare managers. Improved ways of documenting the assessment and implementation of the care provided to individual patients may help to quantify and justify aspects of the CNS role in


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Acknowledging the CNS role in uro-oncology Urology is defined as the branch of medicine concerned with the study of the anatomy, physiology, and pathology of the urinary tract; with the care of the urinary tract of men and women; and with the care of the male genital tract (Mosby’s Medical Dictionary, 2009). This field of practice is divided into two parts, one of which deals with diseases that are of the benign (non-cancerous) pathology and the other with diseases that are of the malignant (cancerous) pathology (uro-oncology). Urological cancers encompass five types of tumours: bladder, kidney, prostate, testicular and penile. Management of urological cancers is governed by strict guidelines to ensure the best clinical outcomes for the patient (NICE, 2002; National Collaborating Centre for Cancer Care, 2014).

Breaking bad news Evidence clearly indicates that the ‘breaking of bad news’ to patients on receipt of their diagnosis (Tarrant et al, 2008) can have a devastating effect on the individual as well as the family or significant other (Kirk et al, 2004; Lomas et al, 2004). In this instance, the CNS, in the role of key worker, is the focal point of contact with the patient post diagnosis (McCulloch, 2004) and is crucial to achieving positive outcomes for patients and their relatives (Oxtoby, 2005; Stringer, 2008). However, from a urological perspective, experience has shown that following the receipt of their diagnosis, often, the ensuing shock affects patients’ ability to deal with the bad news and simultaneously comprehend the information provided to them. In these situations, the uro-oncology CNS understands that previous experiences will drive the patient’s current state of mind. Thus, in attempting to address an individual’s spoken and unspoken fears and anxieties, honesty is paramount in discussing issues with the patient and family members (wife, husband or significant other). The uro-oncology CNS is predominantly involved in caring for newly diagnosed patients with urological cancers and their families, and has the responsibility to be present when patients are informed of their diagnosis by the consultant. At this stage, patients will often have to contemplate their diagnosis, consider the range of treatment options, and make a treatment decision, thus the provision of constructive support (i.e. information and reassurance) is imperative (McCulloch, 2004; Tarrant et al, 2008; Macmillan Cancer Support, 2011). It has been shown that support at this stressful time can enable people to cope better with the sense of fear and confusion that frequently arises, through helping them understand more about the illness (van der Molen and Hutchison, 1999). Such support involves time for the patient and their family to discuss the diagnosis with the uro-oncology CNS honestly, and in a language they all understand, as well as ask questions after they have seen the consultant. Providing information about the diagnosis, treatment options and support services and ensuring followup appointments and diagnostics interventions are instigated in a timely manner (Templeton, 2003). It is important to


allow patients to read information in their own time and that they are given the option of contacting the uro-oncology CNS if they require clarification, or have additional questions or concerns. Evidence suggests that just having the contact number can be a source of reassurance, whether or not the patient actually uses it (Tarrant et al, 2008; HC, 2011). Integral to the CNS performing this role competently is training—particularly in communication. Effective communication skills, particularly at the advanced level (NICE, 2004; Duff et al, 2009; National Cancer Peer Review, 2013), are essential to enable practitioners to capture the ‘unsaid’ feelings of the patient following their cancer diagnosis and receiving the news (Back et al, 2005; McGuigan, 2009). Communication is also vital to ensuring a smooth patient pathway and patient experience, and helps to alleviate anxiety for patients, their family members and carers (NICE, 2008).

The importance of emotional support There is no doubt that cancer is extremely stressful, for those affected by the disease and, to a lesser degree, for those working in this area of practice. The evidence has shown that the psychological and psychosocial impact of a diagnosis of cancer can be alarming (Fan, 2002; Stringer, 2008). As emphasised by van der Molen and Hutchison (1999: 170): ‘an individual’s response to the news is complex and can include an array of emotions which invariably change throughout the cancer experience’. The uro-oncology CNS provides emotional support to all patients, and their relatives, following receipt of the diagnosis, and the expectation is that this task should be done well (Barnet et al, 2007; Dwamena et al, 2008). However, from the author’s experience, to perform the task well, practitioners require increased insight into what a diagnosis of cancer may mean to each individual. This is important, as people will react differently to the diagnosis. Reflection on the author’s practice affirms that for some patients, the psychological and psychosocial effects of a cancer diagnosis are far reaching, especially in cases where the prognosis is less positive. The impact on the health professional is also daunting (Skilbeck and Payne, 2003; Barnet et al, 2007): How does one console the 39-year-old mother of four, who has been told she has advanced metastatic renal cancer? Or the 39-year-old family man who has been diagnosed with advanced prostate cancer that it is imminently lifethreatening? What should the response be when they ask, ‘Am I going to die? I cannot die, what about my children?’ These are the not atypical scenarios to be faced with by the uro-oncology CNS and they demonstrate clearly the importance of the CNS role. In these two scenarios, while both patients and their close relatives who attended their diagnosis with them were rendered distraught by the bad news they had received, the author’s training and communication skills enabled her to have difficult, but truthful and honest, conversations with these patients, and provide the support they needed. In this context, the CNS role is underlined in improving the cancer experience for these patients and their families, by providing the level of emotional and practical

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the management of cancer patients (Handley, 2010; Baxter and Leary, 2011; Fletcher, 2011; Smy et al, 2011).

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URO-ONCOLOGY support they need to get them through this traumatic period. It could be argued that in a seemingly hopeless situation, the CNS’ presence offers patients reassurance and support, and could be instrumental in preventing individuals from completely ‘falling apart’.

Support for the professional In the author’s experience, the ‘breaking of bad news’ and dealing with the ensuing fall-out is a difficult task, and one that can often leave the health professional feeling ‘impotent’ and emotionally drained. Indeed, thoughts of one’s mortality and of one’s family and friends are frequent, and one is regularly reminded of how precious life is. There is some evidence to suggest that access to emotional support, such as clinical supervision (Lusk et al, 2005; Duff et al, 2009), provides a certain degree of self-protection and increases the individual’s ability to do their job. Clinical supervision is the designated interaction between two or more practitioners,within a safe, confidential and supportive environment. The process is facilitated by an appropriately qualified supervisor who provides support and encouragement to enable practitioners to reflect on and discuss their practice and, in so doing, identify, analyse and resolve issues of concern. The overall objective is to ensure the delivery of quality services for patients (Bishop, 2006) by practitioners who are able to manage the personal and emotional impact of their practice (Care Quality Commission, 2013). Support is also considered beneficial to improving the quality of care provided to patients (Bishop, 2006; Driscoll, 2007; Bor et al, 2009; HC, 2011). However, despite these conclusions, and evidence to suggest otherwise, recent reflection on the author’s experiences of ‘breaking bad news’ forces her to acknowledge certain difficulties. For the patient, these can include dealing with the knowledge that there has been a threat to their life, coping with the impact of the news on loved ones and the potential loss of a past life, living with a cancer diagnosis and the fear of disease progression/recurrence. For the health professional, difficulties include increased stress and the risk of emotional burnout. It is understandable, therefore, that concerns have been raised with regards to the efficacy of ‘breaking bad news’, as a technique in itself, in counteracting the subsequent impact of a cancer diagnosis on individuals.

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Conclusions and reflections Over the years, cancer has commanded a significant amount of attention, both in relation to the manifestation of the disease and in its management. Attention commenced prior to the NHS Cancer Plan’s (DH, 2000) vision for improvements in cancer care and is now the main objective of the Cancer Reform Strategy (DH, 2007; HC, 2011). Cancer is a complex disease and one that warrants evidence-based guidelines to ensure a management strategy capable of providing care tailored to meeting the needs of those affected by the disease. Notable in this management is the multidisciplinary team, particularly the CNS. However, these nurses have been the subject of continued debate within the literature with regards to their performance and cost-effectiveness (Hill, 2006; Leary et al, 2008; Tarrant et al, 2008; Dean, 2010, Handley, 2010). There is agreement that standardised levels of practice,

British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 10 

KEY POINTS n Improvements

in technology and diagnostics will ultimately lead to greater numbers of patients surviving cancer. The CNS role is therefore imperative in providing continued representation and support to ensure those individuals who have survived cancer receive the help they need to live relatively normal lives

n Being

able to communicate effectively is an integral part of the health professional’s role and vital in the successful management of cancer patients

n While

CNS are still perceived as being an expensive resource, there is a body of evidence that confirms they are cost-effective and a key element, both in the support processes provided to cancer patients, and in achieving improvements in service delivery

identified by health professionals, employers, commissioners and the public, would provide greater clarity and help to resolve continued controversy (Daly and Carnwell, 2003; Bryant-Lukosius et al, 2004; Nursing and Midwifery Council (NMC), 2005; Doherty, 2009; DH, 2010; Farrell et al, 2011; Vidall et al, 2011). Improvements in diagnostics and treatment modalities have led to significant increases in survival rates and, as a result, many more people are now living with cancer rather than dying from the disease (Macmillan Cancer Support, 2008; 2011; CRUK, 2014). Unfortunately, while such an achievement is commendable, there are inherent problems, of which costs are a significant factor. Experience has shown that a cancer diagnosis can be devastating, although it could be argued that surviving the disease and having to live with the physical, emotional and social implications is equally devastating. It has been noted that emotional support, combined with effective communication skills, is crucial to ensuring positive outcomes for individuals and their relatives (McCulloch, 2004; Back et al, 2005; Oxtoby, 2005; NICE, 2008; Stringer, 2008; McGuigan, 2009; Macmillan Cancer Support, 2011). However, while reflection on uro-oncology CNS practice highlights the importance of the CNS role in the management of this patient group, particularly in the provision of emotional support following the breaking of bad news, it also raises questions regarding the efficacy of the ‘breaking bad news’ intervention in meeting individuals’ needs. These concerns highlight the need for continued research to explore, capture and document the experiences of individuals who have been diagnosed with cancer, to ascertain their perspectives on the manner in which the their diagnosis is imparted, the subsequent effects of this news on them, and the value of the practical, psychological and BJN emotional support provided by the CNS.  Conflict of interest: none Back AL, Arnold RM, Baile WF,Tulsky JA, Fryer-Edwards K (2005) Approaching difficult communication tasks in oncology. CA Cancer J Clin 55(3): 164-77 Barnett MM, Fisher JD, Cooke H, James PR, Dale J (2007) Breaking bad news: consultants’ experience, previous education and views on educational format and timing. Med Educ 41(10): 947-56 Baxter J, Leary A (2011) Productivity gains by specialist nurses. Nurs Times 107(30-31): 15-7 Bishop V, ed (2006) Clinical Supervision in Practice: some questions, answers and guidelines for professionals in health and social care. 2nd edn. Palgrave Macmillan,


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British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 10

British Journal of Nursing. Downloaded from by on November 27, 2015. For personal use only. No other uses without permission. . All rights reserved.

Challenges for the clinical nurse specialist in uro-oncology care.

Cancer is a complex illness that over the years has provoked much fear and speculation for patients, their relatives and health professionals. Emphasi...
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