Perspectives on Cancer Care

Tonks N. Fawcett, Anne McQueen, Tonks N. Fawcett, Anne McQueen

• Publisher: Wiley-Blackwell
• Year: 2010
• ISBN:
  9781444329322
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

Perspectives on Cancer Care is a unique collection of insights from contributors, based on their specific expertise and experience. It provides a range of perspectives on cancer care to inspire readers and encourage high-quality care through an enhanced understanding of patients' needs and carers' skills. The bookpresents a series of chapters highlighting different circumstances and approaches to the complex reality of cancer care. In each chapter the author presents their own picture of their experience of the individual's needs and the care required to address these needs, illustrating the particular sensitivity, trust, empathy and support required in the care of patients with cancer and their families. The holistic approach to total care is a prominent feature in cancer care and this is illustrated throughout the various chapters.

This collection of perspectives on cancer care:

• highlights particular issues in the field
• encourages best practice
• draws on the expertise of specialist practitioners in the field of cancer care
• features a holistic approach to cancer care, illustrated through scenarios

Chapter 1

Cancer: a Journey of Discovery

Tonks N. Fawcett

Life is a journey undertaken on an ocean of experience. All human development, including the experience of illness and health, involves discoveries made on a journey across that ocean of experience.

Barker (2002: 43)

The aim of this opening chapter is to explore what is meant by the cancer journey in its many manifestations. An analysis will be made of the use of metaphors for discussing and understanding cancer, and consideration will be given to how their meanings have changed with social, technological and professional advances. The developments affecting cancer care over the last several decades will be examined, with an appreciation of the tremendous progress that has been made affecting a patient's cancer experience. An examination will be made of how the notion of cancer and the cancer journey, from presentation to outcome, is different in the 21st century and the relevance of concepts such as victim, sufferer, survivor, hope, fear, courage and loss through the cancer journey.

Cancer

Once said, in terms of a diagnosis, the word cancer cannot be unsaid. The word hangs in the air with all its connotations that, in our culture at least, put fear, often abject fear, into the heart of even the most optimistic and knowledgeable individual. After the day of diagnosis, life is never quite the same. Whether, for whatever reason, the diagnosis is realised to be imminent, or whether it comes as some shocking cataclysm, the individual, now suddenly the patient, must seek to make sense of what this means and how it will affect not only the normality of daily life but any possible life aspirations. Questions without answers, or with answers wanted, tumble through the brain as the individual looks for meaning, moving from primeval concerns as to punishment for wrongs committed or to more mundane regrets over such as overexposure to the sun, the curse of nicotine addiction or that casually rejected environmental hazard.

Cancer as Metaphor

In the search for meaning, humans look to metaphors to liken their reality to something which is perhaps more manageable and examinable. Metaphors, Lakoff and Johnson (1980) argue, allow the understanding of one thing in terms of another, giving illness such as cancer a certain symbolism. For most of the 20th century cancer has mainly been seen as a mortal disease, and a dreadful and dreaded disease to be fought, though not often beaten. The notion of cancer as a battle can give some order to the chaos of the diagnosis, as physicians, oncologists and surgeons share a common purpose and the ‘fighting spirit’ is encouraged. Reisfield and Wilson (2004) argue that war is an apposite metaphor with the enemy, the commander, the combatant, allies and an armoury of weapons to hand. Such a metaphor also implies vigour, hope and a serious purpose to offset the sense of hopelessness so ready to surface (Hammer et al. 2009).

Such a metaphor is still very potent and embedded in our cancer care language, but it has been much criticised in recent years. Sontag (2001), rejecting any cultural and societal value of such metaphors, argued that the body is not a battlefield and that such metaphors perpetuate stereotypes and stigma. It has to be recognised that Sontag held a particularly jaundiced, and arguably limited, belief that cancer sufferers were seen as victims of suppressed or failed emotions. She asserted that cancer is not a curse or a punishment and certainly not an embarrassment and that, as understanding of cancer causality and treatment advances, metaphors should become irrelevant. Perhaps what Sontag did not wish to acknowledge was that the use of metaphors is deeply embedded culturally, and energy should be focused on the sensitive and positive role that metaphors offer. The illustration of this can be seen in the widespread use of the metaphor of the cancer experience and trajectory as a journey.

Cancer as a Journey

The metaphor of the journey is not exclusive to cancer or to illness, but is used in many challenges in life, from sport to intellectual activity. Life is acknowledged to be a journey, despite the abiding difficulty for many of confronting the endpoint. The journey for the cancer sufferer is not just linear, through diagnosis, treatment and the consequences thereof, but also an emotional rollercoaster. Not only that, the biology of cancer is itself seen as the transformation journey of a tumour cell (Kumar & Weaver 2009). The idea of serious illness as a journey has had its own potency. Davis (1963), addressing poliomyelitis, saw it as a form of crisis management from prelude and warning stages to the impact stage of diagnosis and the stage of treatment, and its corollary, which Davis described as the inventory stage. Despite its pervasive applicability, the journey defies a unitary description. As indicated above, it is not merely a linear journey through the stages, however real; each patient will travel in their own way. Reisfield and Wilson (2004: 4026) describe the journey metaphor as ‘quieter than the military metaphor’ but still having the ‘depth, richness and gravitas to be applicable to the cancer experience’. They then use the analogy of the cancer as diverting the individual from the freeway to consider the alternative byways imposed by cancer that bring with it the real concerns of uncertainty, fear, anxiety, guilt, loss and anger. They also suggest, however, that these byways may also bring new meanings to life's journey and new insights as to the nature of the traveller and those who care for and journey alongside the traveller. The journey metaphor, they argue, does not talk in terms of winning or losing, but rather of different roads to travel.

However, this author might part company with Reisfeld and Wilson at this point (to continue the analogy) as the whole notion of fostering hope and positive thinking, at least in the early stages of the cancer journey, is inextricably bound up with optimistic outcomes of winning and even, despite this metaphor, successfully defeating an enemy. Perhaps that is the mistake, and those who support and encourage the traveller on the journey should focus equally on the quality of the journey rather than where it will eventually lead them. While embracing the popularity of the journey metaphor, it must not be forgotten that people create their own metaphors of life and life changes, often reflecting their life worlds, for example, as their most demanding performance, their personal race for life, a labyrinth, or a game of chess. Lerner (1994: xiii) combines many metaphors and likens the cancer experience to ‘that of a soldier who is given orders … to parachute into a jungle war zone without a map, a compass or training of any kind’, and Rachel Clark describes navigating round cancer like ‘being dropped in a strange city, without a map or a compass. There are no landmarks and no familiar faces … no signs, no-one speaks your language’ (Clark et al. 2002: 1). Crane-Okada (2007), also using the metaphor of a compass, looking to helping patients on their journey, likens the features of a compass to the holistic support nurses can provide. Barker (2002) suggests a seafaring, ‘tidal’ metaphor for life itself, with crises such as cancer as piracy followed by the possibility of shipwreck before sea legs can be regained and the ship sets sail again. For those caring and in the caring professions, listening to patients' narrative metaphors will provide insights into the unique journey and unique meanings for the many byways of their cancer journey (Skott 2002). For some, the cancer journey may remain real, but their search for a meaning is ‘not always tidy and neat’ (Quinn 2003: 170) and its meaning remains elusive.

The Linear and Rollercoaster Cancer Journey

It can be argued that the cancer journey is everyone's journey in that its prevention, in terms of genetic makeup and lifestyles, is, or should be, part of the matrix of life. Leydon et al. (2003) argue that the cancer journey has no definitive starting point. However, in reality, the ‘presence’ of cancer in the psyche begins with the sense that something is wrong, often set against a pre-existing appreciation of personal risk. With this comes immediately the pervasive sense of uncertainty. Delay can occur at this stage if, for that individual, uncertainty may seem better than a certainty they do not want to face. The challenge of this is recognised in the Cancer Reform Strategy (DH 2007), which aims, not only to raise public awareness of risk factors and signs and symptoms of early cancer, but also to find effective means of encouraging people to seek help sooner. The journey has fully begun when investigations are carried out towards a diagnosis. The individual is now in the game and it is serious. The game is also new, and support is needed in terms of simple, clear and sensitive communications that meet both informational and emotional needs (McQueen 2009). Fallowfield and Jenkins (Fallowfield et al. 2003; Fallowfield & Jenkins 2006) are not alone in their exhortations that, despite communication being the heart of nursing and medicine and a core clinical skill, patients, their families and carers still feel let down by less-than-ideal communication at a time when it matters most. The period of waiting for a diagnosis is arguably the hardest time, and often too long, when the person vacillates between hope and fear, bargaining and despair, not daring to accept optimism and fearing pessimism. Drageset and Lindstrom (2003) explored this in women with breast cancer, revealing anxiety that was hard to ameliorate by support mechanisms. Diagnosis can only serve to reinforce the emotions associated with uncertainty and waiting, emotions now replaced by certainty and decisions.

Reactions to a diagnosis are myriad in nature but Greer (1991) identified denial, fighting spirit, stoic acceptance, helplessness/hopelessness and anxiety. Greer argued that the particular responses can, in some cases, influence the course of their disease but in reality one person may move through all such reactions. Hickey (1986) and Hammer et al. (2009), in their respective ways, stress the primacy of ‘hope-inspiring nursing’ (Hammer et al. 2009: 1) to guard against the sense of hopelessness ever ready to push through and impair healing. Spiegel (2001: 287) looks at hope in relation to having the right attitude to the cancer journey, the ”fighting spirit', a kind of realistic optimism … determined to make the best of it'. Such an attitude is not to be seen as blind or false hope or an overburdening urge to be positive.

Fallowfield (2008), recognising the above, explores the world of the newly diagnosed patient and their family, the amount of new and possibly alien information to be absorbed, so needed (yet so undesired) and so potent for enabling decisions to be made and for future wellbeing. Nanton et al. (2009) argues that, by skilled and carefully tailored information and communications, not devoid of the gentle use of humour, healthcare professionals could reduce the distress of ongoing uncertainty. Although the emotional labour is recognised (see Chapter 10), if this is done well by both doctor and nurse in their respective roles (Dunniece & Slevin 2000; Quinn 2003), the journey to be faced can at least be cushioned by a trusting relationship with those who may seem at that time to hold their very lives in their hands.

The Treatment Journey

For a patient who has presented with distressing symptoms or for an emergency cancer treatment (whether surgery, radiotherapy or various forms of chemotherapeutic and other agents), treatment can be seen as a relief despite the diagnosis. However, for many who believed themselves well, or even ‘very fit’ before diagnosis, treatment makes them ill, often for some time, with spectres of nausea, vomiting, pain and fatigue fixing in the mind (see Chapters 7 and 8). In addition, as some patients find themselves screened for cardiac and renal dysfunction, there comes the realisation that a treatment may damage other organs that indeed, unknown to them or the healthcare professionals, might already be impaired. Even more potent is the reality, for many, of altered appearance, be it through surgical resection, iatrogenically induced loss of hair, weight gain or stress-induced weight loss, all of which can threaten the sense of self (Bredin 2000), and may be considered a form of ‘piracy’ (Barker 2002).

Decisions have to be made. No longer are such decisions made without close consultation with the patient and the family (DH 2007) but sensitivity on the part of the healthcare professionals is needed to discern just how much involvement is desired. Some family members and carers may find this added responsibility, in the absence of seeing in themselves any real expertise, an extra burden (Fincham et al. 2005). Others, who may have already avidly searched internet sources, value such involvement and appreciate the invaluable partnership when so much that is undesired seems to require acquiescence. Such involvement requires considerable support by the specialist team, particularly the nurse, whose presence is seen as being 24/7, i.e. they are always there (Leyden et al. 2003).

The stress of the cancer diagnosis and treatment journey can manifest itself in both psychological and physiological disturbance, and the coping strategies adopted will be varied (Smith & Fawcett 2006). In terms of giving support, particularly as a nurse, Frank (2002: 45) argues that ‘there is no right thing to say to a cancer patient because the cancer patient as a generic entity does not exist. There are only persons who are different to start with, having different experiences according to the contingencies of their diseases’. Some will seek out a new path and, temporarily at least, suspend their ‘other’ life. Others will look to retain their usual life, minimising any deviation from the norm wherever possible. Kyngas et al. (2000: 11) found this tended to be the case with young people with cancer, where resuming their ‘normal life’ was seen as ‘a source of safety’. Miedema et al. (2007) also found the prevailing aim of young people with cancer was to achieve the ‘normalcy’ of their pre-cancer lives. This did not mean a denial of the disease; in order for such an aim to be achieved, optimal social, emotional and informational support was needed. For these young people emotional support often comes from the family, as indeed is so often the case whatever the age of the person with cancer.

Families and carers play key roles and they themselves must receive equal support as they travel this cancer journey. These informal carers often feel helpless and uncertain, possibly not knowing what help is available for them (Soothill et al. 2001). Supporting the crucial role of informal carers, family members or not, has to be a key partnership role of the community nurse alongsi...

Table of contents

• Cover
• Title Page
• Copyright
• Contributors
• Foreword
• Acknowledgements
• Introduction
• Chapter 1: Cancer: a journey of discovery
• Chapter 2: Leadership
• Chapter 3: Peer and Self-Assessment
• Chapter 4: Mitigating Conflict
• Chapter 5: Virtual Teams in Very Small Classes
• Chapter 6: Choosing Online Collaborative Tools
• Chapter 7: Communication Technologies
• Chapter 8: Teaming across Borders
• Chapter 9: Global Corporate Virtual Teams
• Chapter 10: Corporate Virtual Teaming
• Chapter 11: Virtual Engineering Teams
• Chapter 12: Virtual Engineering Teams
• Conclusion
• Color Plates
• Index