Caroline McCaughey, Edel Aughey, and Susan Smyth This chapter examines the psychological sequelae of a cancer diagnosis for the patient and their loved ones. It focuses on three time points – diagnosis, treatment decisions and survivorship – as these have been described in the literature as phases of relevance. The chapter seeks to provide evidence‐based insights into the varied psychological responses that patients may experience and strongly advocates for a personalised approach to the support and management of the patient by the clinical nurse specialist (CNS). Furthermore, it explores tools and approaches that may foster an effective therapeutic relationship between the CNS and the individual with cancer. Finally, the emotional consequences of ongoing care by the CNS are acknowledged, and the value of self‐care, peer supervision and managerial support is discussed. This chapter is approached not as an exhaustive exploration of the vast topic of psychological care provided by the cancer clinical nurse specialist (CNS) but rather from the perspective of experiential insights gleaned from practice and the literature. These have been accrued from the viewpoints of the three authors: a practice educator/honorary senior lecturer at Queen’s University Belfast, whose role involves the education of CNSs (CMcC); a nurse consultant with line management responsibility for CNSs (EA); and a haematology specialist nurse (SS). All three have extensive experience in providing care to individuals with cancer and their families. This chapter will approach psychological support in two parts. The first part will explore the impact of a cancer experience on the individual diagnosed with cancer and their family/significant others and the psychological care that the CNS should provide in a supportive and empowering manner. The second part will focus on the inextricably linked aspect of support and self‐care for the CNS so that they can effectively sustain the challenge of providing psychological care unrelentingly throughout a career in cancer nursing. A cancer diagnosis is a life‐changing event, understandably causing acute psychological distress often characterised by shocked disbelief, anxiety, denial, anger and sadness (Matthews et al. 2019). Indeed, McDonald (2016) identifies that one‐third of individuals with cancer are thought to be at high risk of a psychological disorder within the first year of diagnosis. According to Johnson et al. (2015), the adverse impact is related to the existential threat of the disease, potential psychosocial consequences on employment and family/social life, and disease‐ or treatment‐related symptomologies such as pain, dyspnoea, nausea and altered body image. In a recent study, Muzzatti et al. (2022) recognised anxiety and depression as related (yet distinct) dimensions of psychological distress. This study reported incidence rates of 17% for anxiety and depression simultaneously, and 21% of patients had either anxiety or depression. They affirm that psychological distress is common and disturbing for all patients during the cancer trajectory and advocate for the usefulness of assessing both the intensity and prevalence of anxiety and depression using tools such as the validated Hospital Anxiety and Depression Scale (HADS). Seiler and Jenewein (2019) and Hauk et al. (2021) acknowledge that the traumatic and uncontrollable nature of the often sudden diagnosis of cancer can make individuals vulnerable to long‐lasting negative psychological outcomes incorporating distress, anxiety, insomnia, fatigue, depression and reduced quality of life. Consequently, Tauber et al. (2019) identify that this may lead to the overuse of scarce healthcare services or, conversely, non‐engagement behaviours with health services. In a literature review regarding risk factors for psychological distress, Arroyo et al. (2019) reported that whilst study findings lacked consistency, commonly cited factors included younger age, lower education level, unmarried status, non‐engagement in physical activity, menopausal symptoms, employment status, aggressiveness of anti‐cancer therapy and presence of other comorbidities. Hardardottir et al. (2022) also identify a history of psychological morbidity as an additional risk factor for psychological distress. Although this awareness is important for the CNS, the divergent study findings emphasise the necessity of an individualised patient assessment. Fradgley et al. (2019) outlines how the International Psycho‐oncology Society (IPOS) emphasise that distress should be measured as the sixth vital sign alongside temperature, blood pressure, pulse, respiratory rate and pain and that treating distress is an essential component of high‐quality care. The National Comprehensive Cancer Network (Riba et al. 2019) define distress as a multifactorial, unpleasant emotional experience that is psychological, social, spiritual and/or physical and may interfere with an individual’s ability to cope with a cancer diagnosis, symptoms and treatment. Despite the prevalence of distress, particularly in the initial weeks post‐diagnosis (Hardardottir et al. 2022), Molassiotis et al. (2020) uncover issues of inadequate psychosocial care, symptom control and unmet information needs. They identify the essential role of the specialist nurse in completing a holistic needs assessment (HNA), providing and coordinating supportive care, and associating this intervention with improved emotional functioning and symptoms, thus lowering service utilisation and reducing cost. Macmillan Cancer Support (2021) advocate for an HNA as a key intervention to structure conversations, identifying patient concerns and thus developing a more personalised, collaborative care and support plan. Whilst not consistently utilised in practice, Snowdon et al. (2011) suggest the distress thermometer, commonly included in an HNA, as a well‐validated screening tool with a brevity that makes it ideal to incorporate into clinical practice. The National Institute for Health and Care Excellence (NICE) (2004) postulate that psychological support can be separated into two categories (Table 6.1). Category one incorporates level one and level two and can be provided by healthcare professionals who have some training in assessment and frontline management of psychological problems but are not mental health practitioners. Category two incorporates levels three and four and can be provided by trained, accredited practitioners such as counsellors or mental health professionals. The CNS role sits within the definition of level two support, which incorporates professionals who are guided by holistic assessment to formally detect distress and offer interventions to enhance self‐care and adjustment on a daily basis. Furthermore, they may need to offer referral to more specialised services. Table 6.1 Categories of psychological support. Person‐centred practice is advocated globally as an approach to care for all healthcare professionals and has been demonstrated to improve patient outcomes. It is ‘an approach to practice established through the formation and fostering of healthful relationships between all care providers, service users and others significant to them in their lives. It is underpinned by values of respect for person, individual right to self‐determination, mutual respect and understanding. It is enabled by cultures of empowerment that foster continuous approaches to practice development’ (McCormack and McCance 2017, p. 3). In order to maintain a focus on adopting a person‐centred approach, the theory will be applied to a case study, which for confidentiality and anonymity purposes will be a hybrid of a number of patients who have taught the authors valuable lessons in their nursing careers to date. There will be a focus on three significant points in the patient trajectory, cited by Samuelsson et al. (2021) as phases of relevance: the point of diagnosis, treatment decision‐making, and embarking on survivorship. It is recognised by Arroyo et al. (2019) and Samuelsson et al. (2021) that the cancer trajectory often follows a winding path, with overlap along the survivorship and palliative care routes. Whilst it is recognised how critical psychological support is in the palliative and end‐of‐life phase, the focus will remain on the three time points outlined, with the understanding that many of the evidence‐based skills and strategies are transferable to any point of the patient’s pathway. Table 6.2 SPIKES framework. Given the potential enormity of a cancer diagnosis, Matthews et al. (2019) conducted a meta‐synthesis to explore the experiences of patients and their families receiving bad news about cancer. Conclusions reported that the impact could be modulated by the quality of how the difficult news is delivered, with additional training suggested to enhance the healthcare professional’s ability to deliver this news sensitively and with appropriate support. This would reflect the first author’s (CMcC) experience, having been responsible for co‐facilitating a two‐day Wilkinson Model communications skills training course for healthcare professionals in the cancer setting (Wilkinson et al. 2008; Rutherford and McCaughey 2015). The training provides resources and tools that have been utilised by all the authors in their roles as nurses in cancer clinical practice. The first of the models is the SPIKES framework (Table 6.2) outlined by Baile and Parker (2017). This anagram is easily understandable and, importantly, can be applied to many situations throughout the cancer trajectory, including diagnosis, recurrence and transition to palliative care. Interestingly, Blanckenburg et al. (2020) note that the SPIKES protocol was designed from a healthcare professional’s perspective. To address this, they conducted a study to ascertain patients’ preference for the communication of bad news, with the motivation that person‐centred communication is less anxiety‐provoking. Implications of their findings were that all SPIKES components were seen as highly relevant, with an emphasis on the importance of tailoring support and approaches to individual preferences whilst incorporating the six steps. Patient feedback stressed the need to explore concerns, provide an opportunity to express feelings and involve the patient in decision‐making. This case study highlights the use of a second tool called ICE (ideas, concerns and expectations), promoted by Finn et al. (2017) and designed to assess patients in a more holistic and individualised way. By exploring ideas, the CNS establishes the patient’s thoughts, beliefs and feelings about their condition whilst eliciting specific concerns at this point in their illness. Finally, expectations facilitate an enquiry into the patient’s hopes and what they would like to happen, providing insight into the degree to which they correlate with what the CNS anticipates. The authors have found this tool particularly useful in uncovering any unrealistic patient expectations, which the CNS may gently and sensitively explore. In this situation, we would utilise the ‘Wish, Worry, Wonder’ communication support framework (Dana‐Farber Cancer Institute 2016, p. 12). ‘I wish’ allows the CNS to align with the patient’s hopes, with the expression of ‘I worry’ providing an opportunity for being truthful about the situation. ‘I wonder’ provides a subtle insight to make an alternative recommendation or introduce a different perspective. This highlights the often‐different needs required by patients and their families, necessitating that the CNS be cognisant of the individualised person‐centred approach required in their care delivery and assist all involved parties with their emotional and informational needs to reduce the psychological distress so often felt at this pertinent time (Samuelsson et al. 2021). Rodenbach et al. (2019) suggest that tensions can arise when there are conflicting perspectives between the patient and family member and advise that anticipating these emotionally charged exchanges can help the CNS deal calmly with family tensions. Whilst imparting knowledge and information is an important step in the SPIKES framework, Korsvold et al. (2016) caution that communication can be inappropriately dominated by one‐way information‐giving, a position that Zimmermann and Del Piccolo (2007) concur with. These authors contend that one of the crucial challenges in communication is being attentive to patients’ expressions of emotions and needs; these often indicate emotional distress of clinical significance and can be expressed with cues. Korsvold et al. (2016) identify that patients often express their emotions indirectly, using hints and cues, and there are large variations in how healthcare professionals respond. This may lead to missed opportunities for empathic opportunities. Korsvold et al. (2016) elaborate on the importance of acknowledging and validating the patient’s emotions rather than simply responding with medical facts; otherwise, if a patient does not feel heard and understood, they may be less satisfied with their care, remember less information and be more reluctant to follow advice. Zimmermann and Del Piccolo (2007) clarify that cues differ from concerns, which are mostly verbalised emotions; as patients often hide emotions, healthcare professionals may only uncover them if they pay adequate attention. As well as verbal hints, cues may also be non‐verbal and expressed by, for example, body posture or voice inflexion. Zimmermann and Del Piccolo (2007) found that clinicians often missed cues by interrupting, avoidance, discouraging expression of emotions, giving information or providing premature reassurance, thus alerting us to be observant for these blocking behaviours in our practice. Cues subsequently can be acknowledged and explored using clarifying, open and probing questions. Zimmermann and Del Piccolo (2007) make the salient point that cues take listeners into the patient’s agenda and thus are a vital addition to the ICE framework. Dr Kathryn Mannix, a palliative care consultant, provides challenging and enlightening insights in her book Listen, and we recommend this reading material to all CNSs (Mannix 2021). Dr Mannix emphasises not just listening but attentive listening to understand. Her writing resonates, as on reflection, CNSs would be likely to acknowledge that the quality of listening may be imperfect. Often, CNSs are too busy thinking of the next question to ask the patient and thus miss vital cues and information in the moment. We hope the following excerpt provides some challenge and reflection. When was the last time … you felt that someone appreciated not only the words you were saying, but why the matter under discussion was important to you? … What we are considering here is not simply being listened to, but being heard. (Mannix 2021, p. 25) Dr Mannix suggests the alternative phrase ‘unwelcome news’ as preferable to ‘bad news’, as it conjures up the many times CNSs may deliver information that the patient finds undesirable, even though we may not have considered it as significant as diagnostic/prognostic news. Moreover, along with other authors (Matthews et al. 2019; Mailankody and Rao 2021), Dr Mannix emphasises the importance of truth‐telling, underscoring that truth with kindness is core. I’ve been using the word tender to describe sensitive conversations for several years now…. ‘Courageous/challenging/difficult conversations’ all evoke a self‐defence response that as the very opposite of the ‘I’m here for you’ mind‐set that these conversations require. Tenderness seemed to me to conjure the disposition most helpful for discussions that are painful to one or both parties. It acknowledges the presence of pain not as something to be overcome, but an experience to be held with sensitivity and respect…. It’s not about difficulty, courage or challenge. It’s simply about being intentionally, fully present. (Mannix 2021, p. 37) A particular reassuring point made by Mannix (2021) is that it is understandable to feel that we do not always know what to say. She acknowledges the complexity of the situations and dilemmas patients face, and cautions us to be mindful that our task is not always to solve but sometimes simply to listen. With this approach, she proposes that words will come from the heart rather than the head and convey the authentic empathy and concern that Jeffrey (2016) rates as valuable. Like Pease (2017), Mannix dwells on the importance of silence in painful conversations to provide space to think; slowing down the pace helps to focus on what is being said.
6
Psychological Support
Abstract
6.1 Introduction
6.2 Part One: The Impact of a Cancer Diagnosis
Recommended model of professional psychological assessment and support
Level
Group
Assessment
Intervention
←Self‐help and informal support→
1
All health and social care professionals
Recognition of psychological needs
Effective information‐giving, compassionate communication and general psychological support
2
Health and social care professionals with additional expertise
Screening for psychological distress
Psychological techniques such as problem‐solving
3
Trained and accredited professionals
Assessed for psychological distress and diagnosis of some psychopathology
Counselling and specific psychological interventions, such as anxiety management and solution‐focused therapy, delivered according to an explicit theoretical framework
4
Mental health specialists
Diagnosis of psychopathology
Specialist psychological and psychiatric interventions such as psychotherapy, including cognitive behavioural therapy (CBT)
6.2.1 Time Point One: Breaking Significant News
S
Set up the interview – consider privacy, uninterrupted time, rapport building.
P
Review the patient’s perception of the illness.
I
Get an invitation from the patient to deliver the news – determine how much information the patient wants, and provide a ‘warning shot’ that bad news is coming.
K
Give the patient knowledge and information.
E
Respond to the patient’s emotions.
S
Summarise the treatment plan, and review all that has been discussed.
6.2.2 Time Point Two: Treatment Decision‐Making
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