Perspectives on Cancer Care E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 592

Veröffentlichungsjahr: 2010

Beschreibung

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 book presents 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

Leseprobe

Contents

Cover

Title Page

Copyright

Contributors

Foreword

Acknowledgements

Introduction

References

Chapter 1: Cancer: a journey of discovery

Cancer

Cancer as a Journey

The Treatment Journey

Life After Treatment

The Cancer Care Journey: Then and Now

Cancer Journeys: Stories and Narratives

Reflections on the Journeys

References

Chapter 2: Leadership

The Relevance of Genetics to the Nurse's Practice

Identifying Individuals with or at Risk of Genetic Conditions

Gathering Multi-Generational Family History Information

Using Family History Information to Draw a Pedigree

Recognising a Mode of Inheritance in a Family

Assessing Genetic Risk

Referring Individuals to Specialist Sources

Genetic Laboratory Testing

Communicating with Individuals, Families and Healthcare Staff

Rare Cancer Syndromes

Conclusion

References

Chapter 3: Peer and Self-Assessment

Significance of Cancer in Childbearing

Interaction of the Cancer with the Pregnancy and Childbirth

Cancer, Childbearing and Conflicts of Interest

Implications for the Midwife and Other Staff

Support for the Childbearing Woman with Cancer and Her Family

Conclusion

Acknowledgements

References

Chapter 4: Mitigating Conflict

Pathophysiology of Oral Mucositis

Measuring Oral Mucositis in Adults

Measuring Oral Mucositis in Children

Development of Children's International Mucositis Evaluation Scale

Conclusion

References

Chapter 5: Virtual Teams in Very Small Classes

Incidence

Origins and Classification

Aetiology

Clinical Manifestations of Primary Malignant Brain Tumours

Prognosis

Impact of Diagnosis on the Patient and their Family

Diagnostic Investigations

Treatment

Medical Management

Palliative Care

A Multidisciplinary Approach

The Future

References

Chapter 6: Choosing Online Collaborative Tools

Becoming a Cancer Surgeon

Surgery as a Treatment Regime for Cancer

Principles of Cancer Surgery

The Surgeon and the Patient Newly Diagnosed with Cancer

The Multidisciplinary Team

Recovering from Cancer Surgery

The Surgeon and the Clinical Nurse Specialist

The Joys and Heartaches of a Cancer Surgeon

Conclusion

References

Chapter 7: Communication Technologies

The Concept of Total Pain

Assessment and Management of Emotional, Psychological or Spiritual Pain

Assessment and Management of Pain

The Use of Adjuvant Analgesics

The Specific Challenge of Neuropathic Pain

Other Pain-Relieving Measures

Relieving Pain at the End of Life

Conclusion

References

Chapter 8: Teaming across Borders

Definitions of Cancer-Related Fatigue

The Experience of Cancer-Related Fatigue

Assessing and Measuring Cancer-Related Fatigue

Causes and Mediators of Cancer-Related Fatigue

Management of Cancer-Related Fatigue

Discussion

Conclusion

References

Chapter 9: Global Corporate Virtual Teams

Preparation of Research Nurses

Phases of Clinical Trials in Cancer Care

The Nurse–Patient Relationship in Cancer Clinical Trials

Conclusion

References

Chapter 10: Corporate Virtual Teaming

Caring

Emotional Work

Emotional Intelligence

Caring in Cancer Nursing

Conclusion

References

Chapter 11: Virtual Engineering Teams

Incidence, Risk Factors and Aetiology

Presenting Features, Diagnosis and Staging

Management and Treatment

Self-Care and Supportive Interventions

Conclusion

References

Chapter 12: Virtual Engineering Teams

The Nature of Hope

Models and Frameworks

The Gold Standards Framework

Person-Centred Care

Liverpool Care Pathway for the Dying Patient

Models, Frameworks and Hope

Conclusion

Acknowledgements

References

Conclusion

Color Plates

Index

This edition first published 2011

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Library of Congress Cataloging-in-Publication Data

Perspectives on cancer care / edited by Josephine (Tonks) N. Fawcett and Anne McQueen.

p.; cm.

Includes bibliographical references and index.

ISBN 978-1-4051-9570-6 (pbk.: alk. paper) 1. Cancer–Nursing. 2. Cancer–Patients–Care. I. Fawcett, Josephine

N. II. McQueen, Anne.

[DNLM: 1. Neoplasms. 2. Patient Care. QZ 200 P4671 2011]

RC266.P48 2011

616.99'40231–dc22

2010020479

A catalogue record for this book is available from the British Library.

This book is published in the following electronic formats: ePDF 9781444329315; ePub 9781444329322

Contributors

Ashley Brown, md (London), frcs (England), is currently Demonstrator of Human Anatomy in the University of Cambridge and teacher in Surgery at the London School of Surgery, Imperial College London, UK.

Patricia B. Campbell, BS, RGN, MS, is Clinical Nurse Specialist, Clinical Trials, Cancer and Palliative Care, Western General Hospital, Edinburgh, UK.

Roseanne Cetnarskyj, PhD, PG Cert (education), BSc(SPQ), RGN, is Lecturer in Nursing/Honorary Genetics Counsellor, School of Nursing, Midwifery and Social Care, Edinburgh Napier University, Edinburgh, UK.

Margaret Colquhoun, MA, RGN, SCM, MN, PG Cert (TLHE), is Senior Nurse Lecturer at St Columba's Hospice, Edinburgh, UK.

Antonia Dean, BSc(Hons), Dip Onc Nurs, PG Cert (counselling), is Clinical Nurse Specialist, Breast Cancer Care, London, UK.

Josephine (Tonks) N. Fawcett, BSc (Hons), MSc, RN, RNT, FHEA, is Senior Lecturer, Nursing Studies, School of Health in Social Science, The University of Edinburgh, Edinburgh, UK. Honorary Senior Lecturer, NHS Lothian University Hospitals Division, Edinburgh UK.

Rachel Haigh, RGN, BSc, PGDip, MSc, is Colorectal Cancer Nurse Specialist, Edinburgh Cancer Centre, Western General Hospital, Edinburgh, UK.

Vicky Hill, BA, BSc, RGN, RN (mental health), is Clinical Audit and Effectiveness Facilitator at St Columba's Hospice, Edinburgh, UK.

Gillian Knowles, RGN, BA, MPhil, is Nurse Consultant in Cancer, Edinburgh Cancer Centre, Western General Hospital, Edinburgh, UK.

Rosemary Mander, MSc, PhD, RGN, SCM, MTD, is Emeritus Professor of Midwifery in the School of Health In Social Science The University of Edinburgh, Edinburgh, UK.

Shanne McNamara, RGN, Diploma Cancer Nursing, MSc, is Specialist Nurse for Neuro-oncology, Edinburgh Centre for Neuro-oncology, Western General Hospital, Edinburgh, UK.

Anne McQueen, BA, MSc, Mphil, RGN, SCM, RCNT, NT, FHEA, is Honorary Lecturer, Nursing Studies, School of Health in Social Science, The University of Edinburgh, Edinburgh, UK.

Papiya B. Russell, BMedSci (pharmacology), MB, ChB, MRCP(uk), is Staff Grade Physician in Palliative Medicine, Marie Curie Hospice, Edinburgh, UK.

Lillian Sung, MD, PhD, is Clinician Scientist at The Hospital for Sick Children, as well as an Associate Professor in the Pediatrics and Health Policy Management and Evaluation Departments at the University of Toronto, Toronto, Canada.

Anil Tandon, MB, BS, FRACP, is Consultant Physician, Palliative Care Service, Sir Charles Gairdner Hospital, Perth, Australia.

Deborah Tomlinson, MN, RN, Dip Cancer Nursing, is Clinical Research Nurse Coordinator, Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada.

Foreword

The original proposal for this book described it as a ‘reader’ and, in the era of sound-bites delivered by kilobytes, this is very welcome. I am as guilty as anyone of turning to a well-known search engine for every bit of information I need, rarely reaching for the bookshelves. In fact, I pride myself in being able to answer every question posed by my research students within minutes, by the above means; the supervision session usually ending with ‘You could have done that!’ With information being so readily available – but often only precisely what you needed to know and no more, and not always from a verifiable source – a reader seems the perfect antidote to the relatively recent phenomenon of ‘hit and run’ learning.

Perspectives on Cancer Care is described by the editors as a book that will inspire, offer insight, enhance knowledge and encourage best practice, and as one that will sit alongside more comprehensive cancer textbooks. As such, the book presents expert views that would have been unlikely to be gathered together under another cover. Had these authors been writing a textbook, they would have been less free to express their expert views, given that textbooks can often constrain writers rather than get the best out of them.

Few of us have not been touched by cancer, either as a matter of personal experience or the experience of a close family member. Despite some of the outer fringes of the ‘let's be positive about the cancer experience’ movement, it is a fact that more people now live with and through cancer to survival than ever before. Many reflect on the time as life-changing and on having found new resources and inner strength. However, as the first editor, Tonks Fawcett, says in her opening chapter on the cancer experience: ‘Once said, in terms of a diagnosis, the word cancer cannot be unsaid.’ I am not aware of anybody who has welcomed a diagnosis of cancer, nor has it elicited envy in others as a result. This opening chapter is an excellent essay on cancer and deserves to be read widely as it reflects on the medical, sociological and even the political aspects of cancer, and offers insights into the personal journey. Realistically, the book ends with end-of-life care; cancer continues to kill people who, without expert care, will suffer pain and distress which will instil fear in those close to them and, so much worse, may lead to the loss of hope.

Without some knowledge of molecular biology and the insensible second-by-second homeostatic adjustments that our bodies make – and just how close we live to cancer in our daily existence – few of us know how likely we are to develop some kind of cancer. I write this in my mid 50s, knowing full well that I harbour (as does every man of my age) cellular changes in my prostate that the prospect of longevity only makes more likely to manifest itself as cancer of the prostate. Therefore, for many, survival into old age with the decline in the protective mechanisms which, for lack of a better metaphor, ‘fight’ cancer at the level of our DNA, makes the development of cancer a strong possibility. For some, however, this prospect is heightened by not choosing their parents carefully and, speaking from personal experience, I am now filmed from a particular angle that few would choose voluntarily, every five years, through my poor choice of parents. The inclusion of a chapter on genetics and cancer is, therefore, entirely appropriate.

It is impossible to mention every author in the book in the space available, and this is not a review, but three other chapters in Perspectives on Cancer Care deserve special attention, purely from the perspective of novelty. Rosemary Mander's chapter on the care of the childbearing woman with cancer presents a situation that few would automatically consider when they think of cancer: bringing forth new life in a body that is having its own struggle to survive. While Mander, a midwife, may not agree with me, childbearing seems sufficiently dangerous without the added stress of cancer and there is a great deal more to consider than merely the effect on the woman: what effect does treatment have on the rapidly developing fetus, and is breast-feeding possible while taking chemotherapy? Ashley Brown considers cancer and the surgeon, and even raises the possibility of surgeons becoming redundant with respect to cancer as medical treatments become more successful. Metaphors about turkeys and Christmas come to mind and Brown – a surgeon – describes the changing role of the surgeon and the new possibilities that are developing for different types and levels of surgical intervention as cancer treatment improves. The third chapter worth mentioning in this light is the one on the role of the clinical research nurse in cancer clinical trials, by Patty Campbell. Research nurses are a vital but, arguably, neglected group in clinical research, often going unnoticed. However, this is being addressed in the United Kingdom through proper training and increasing recognition by way of, for example, well-deserved co-authorship. The inclusion of this chapter in this reader is very welcome.

To learn about cancer, its effects and its treatments, this book provides me with much that I need to know, short of experiencing cancer myself. The book is a reader aimed at nurses and others learning in the context of higher education, but it could also provide a useful reader for the person suffering from or being with someone being treated for cancer. As nurses and other clinicians, we often seek insight into conditions so that we may understand them better and provide better care. This book should achieve that and it may also provide, as it did for me, a greater insight into the work of people who care for people with cancer.

Roger Watson FRCN FAAN

The University of Sheffield School of Nursing and Midwifery, Sheffield, UK

Acknowledgements

First and foremost my sincere thanks go to my good friend and colleague Anne McQueen whose co-editing of this reader was invaluable. Equally sincere thanks must go to all our contributors, clinical and academic, without whose enthusiasm and expertise, the project would not have come to fruition. Thanks also must go to Roger Watson for his lively foreward and, of course, to Wiley–Blackwell for supporting the proposal through to publication. Last, but by no means least, so much appreciation must go to the undergraduate student nurses at the University of Edinburgh who inspired this reader in the first place.

Tonks N Fawcett

August 2010

Introduction

Tonks N. Fawcett and Anne McQueen

The real voyage of discovery consists not in seeking new lands but in seeing with new eyes.

Marcel Proust

Nursing care in the 21st century requires not only an understanding of scientific evidence on which to base care decisions, but also the sensitive appreciation of the human response to illness, the primacy of caring and the paramount skills of communication – the heart and art of nursing. The challenge for nurses, and for all heathcare professionals, is to maintain, simultaneously, their mastery of the state of the science and their capacity for the art of patient care.

This book is concerned with caring for individuals with cancer. The authors of the individual chapters write from their own particular expertise and passion on the subject of cancer care; they aim to communicate their enthusiasm for their particular topic and their commitment to the highest quality of care for those diagnosed with cancer. The styles in which the chapters are written also demonstrate the authors' perspectives. Some are writing from the perspective of ‘hard’ scientific evidence from which best practice emerges. Others look more qualitatively at the experiential aspects of cancer. All the chapters contribute to developing knowledge, understanding and the professional care of those experiencing cancer.

The text is considered to be a ‘reader’ to support commonly taught undergraduate or postgraduate programmes and courses, or can be seen as a supplementary book providing special insights from clinicians, based on their specific expertise and experience. It is not intended to be a comprehensive text on cancer care but rather (as the title suggests) to offer some perspectives on cancer care that can inspire readers and encourage high-quality care through an enhanced understanding of patients' needs and carers' skills.

In accordance with the title, Perspectives on Cancer Care, the text presents a series of chapters highlighting some central issues in the management of patients with cancer. Different circumstances and approaches to the complex reality of cancer care are presented. The text addresses both practical and interpersonal skills and each chapter is based on sound research findings and critical appraisal of the relevant literature. The holistic approach to total care is a prominent feature in cancer care and this is illustrated through the different cancer scenarios represented in the various chapters. The special need for sensitivity, trust, empathy and support in the care of patients with cancer and their families is illuminated through the book.

Purpose of the text:

To collate and present perspectives on cancer care that highlight particular issues in cancer care;To provide a concise volume with some insights and experience that can be of value to others in the field.

Aims of the text:

To inspire readers caring for individuals with cancer;To give insight into patients' needs and how these can be addressed;To enhance knowledge of literature and its relevance to practice;To encourage best practice and a high quality of care for individuals facing cancer.

The aim and purpose of the text is achieved by drawing on the expertise of specialist practitioners in the field of cancer care.

Cancer Care: An Introductory Overview

Cancer is common in the United Kingdom (UK) and indeed it is prevalent worldwide. Although causes and risk factors related to our current lifestyle are associated with cancer, it is not a new disease. Around 400 bc, Hippocrates, a Greek physician and the father of medicine, is claimed to have given the name cancer to tumours whose appearance resembled a crab; and he is credited with distinguishing between benign and malignant tumours. However, Hippocrates was not the first to discover the disease since the earliest case to be documented was reported on a papyrus, in Egypt, some time between 3000 and 1500 bc (www.cancerresearchuk.org). It was not until the 19th century that the concept of metastases via the bloodstream was appreciated. However, since Francis Crick and James Watson described the structure of deoxyribonucleic acid (DNA) it has been possible to study cancers at a molecular level, and now to have the possibility of developing new and exciting treatments.

It is recognised that there are more than 200 types of cancer, originating from different causes, presenting with different symptoms and requiring different forms of treatment or management. It is estimated that more than one in three people will develop some form of cancer during their lifetime. In July 2010 Cancer Research UK reported in the region of 298,000 new cases of cancer (excluding non-melanoma skin cancer) being diagnosed each year in the UK; breast, lung, large bowel (colorectal) and prostate cancers accounting for over half (54%) of all new cases (http://info.cancerresearchuk.org/ 2010). Almost 11 million new cases of cancer are diagnosed each year worldwide, 26% of these being in Europe (http://info.cancerresearchuk.org/cancerstats/world/ 2009).

Cameron and Howard (2006: 258) state that ‘the key to understanding the clinical behaviour of cancers lies in their biology’. Cancer results from an error or defect in cell division; usually resulting from defects or damage in one or more of the genes involved in cell division. The damaged or mutated genes can start to divide uncontrollably and these defective cells multiply to form a lump of abnormal tissue, the tumour. Four main types of genes are involved in cell division, and defects of these can be seen in cancer:

OncogenesTumour suppressor genesSuicide genesDNA repair genes

When oncogenes are activated, they speed up a cell's growth rate. When one is damaged cell division becomes uncontrolled. Tumour suppressor genes inhibit cell division and require to be ‘switched off’ by other proteins before a cell can grow. Apoptosis, or cell suicide, can occur when something goes wrong with a cell, to prevent damage to neighbouring cells. If the suicide genes become damaged, then a faulty cell can keep dividing and become cancerous. DNA repair genes enable damaged genes to be repaired. Body cells contain many proteins which are able to repair damaged DNA and the majority of DNA damage is probably repaired quickly, with no ill effects. However, if the DNA damage occurs to a gene which is responsible for making a DNA repair protein, a cell's ability to repair itself will be reduced. This can allow errors to build up in other genes over time and can result in cancer, something now thought of as genome instability.

In malignancy, for whatever reason, ‘the homeostatic mechanisms related to cell division fail’ (Watson & Fawcett 2003: 78) and the cancerous cells divide uncontrollably usually to form a tumour. Tumorigenesis is a multistep process, the developing tumour seen as clonal expansions. Such tumours may initially be symptomless according to their location but may press on nerves, block the digestive tract, obstruct blood vessels, or release hormones that can interfere with normal body processes. Cancers can spread to other tissues, distant to the primary source. This occurs when a single cancerous cell breaks away from the main tumour and travels via the circulatory or lymphatic system, the cerebrospinal fluid or via serous cavities to other tissues of the body. At the new site, new blood vessels grow to provide it with oxygen and nutrients (angiogenesis). Indeed, Hanahan and Weinberg (2000) identify six capabilities of cancers, acquired directly or indirectly through mutations in specific genes.

1. Self-sufficiency in growth signals, this autonomy modulated by oncogenes;

2. Insensitivity to antigrowth factors that normally regulate cell advance through the G1 phase of the cell cycle);

3. Evasion of apoptosis, programmed cell death, often associated with deactivation of the tumour suppressor gene, p53;

4. Limitless ability to replicate as a result of the above capabilities leading to uncontrolled proliferation;

5. Sustained angiogenesis via an ‘angiogenic switch’ in the course of cancer progression;

6. Tissue invasion and metastases which depend on all the above capabilities.

If left undetected and untreated the individual will, sometimes sooner, sometimes later, experience the consequences of this ‘intimate enemy’ (Marieb 2001: 142).

Cancer is recognised as a major fear by the public and this is not surprising since one in four of all deaths in the UK occurs as a result of cancer. However, half of the number of people diagnosed with cancer now survive for more than five years, and the average ten-year cancer survival rate has doubled over the last 30 years. Notably, the overall cancer death rate has fallen by 10% over the last decade (www.cancerresearchuk.org). Much of the improved prognosis is due to advances in knowledge and technology, facilitating earlier diagnosis and more refined treatments.

Although cancer affects individuals, and is not infectious, it is a disease that has effects on the whole family. Those within the family are affected by the changes cancer imposes on the individual; changes to their role within the family, the implications of ongoing treatments and their side effects, emotional upsets on a day-to-day basis, and worries about the future for their loved one and for themselves. Treatment for an individual with cancer therefore requires to include the needs of the family and this forms an important part of the nurse's role.

The prevalence of cancer means that all practising nurses will be involved in the care of individuals with cancer and will require knowledge and skills to cope with their particular needs. However, advances in cancer treatment and care have also provided opportunities for the emergence of nursing specialties such as the clinical nurse specialist in cancer care, the genetic counsellor, the genetic research nurse and the palliative care nurse, to name but a few. These specialists apply their expertise to provide the required sensitive, dedicated care to cancer patients and their families through the different stages of their cancer journey.

Such specialists are among the contributors to this book. This ‘reader’ is essentially written for student nurses and qualified nurses, not necessarily specialising in oncology, but who will meet patients with cancer in their varying nursing roles. However, it may also be of interest to specialist nurses in cancer care since the specialist practitioners contributing to the book express and share their passion for best practice in cancer care. The virtue of such a text is that it looks to bring together issues in cancer care that are well recognised, and some perhaps less well-recognised areas of expertise. Whilst issues such as pain management and hope are recognised as central in cancer care, they are included here together with genetic issues and the important position of the cancer research nurse. The chapter headings are intentionally selective and diverse in nature, highlighting issues that the authors believe to be significant in cancer care and where there is a need for attention to be focused in a reader. While this adds to the existing literature base, it is a unique text, ‘speaking to’ the readers and at the same time allowing them to explore critically the knowledge, skills and evidence presented to enhance their professional practice. As already suggested, this is not intended to provide comprehensive coverage of the domains of cancer care; rather as a ‘reader’ the content seeks to reflect differing perspectives of the chosen contributors, collected into a single volume for publication.

Chapter 1 explores what is meant by cancer as a journey of discovery. The developments affecting cancer care over the last several decades are examined with an appreciation of the tremendous progress that has been made, affecting a patient's cancer career. An analysis is made of the use of metaphors for discussing and understanding cancer, and consideration is given to how their meanings have changed with the social, technological and professional advances. An examination is 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.

Chapter 2 illustrates how cancer genetics is integrated into healthcare, and its value in cancer care. The authors emphasise the importance of having knowledge of cancer family history, and fundamental to this is the current guidance from government and professional bodies. The skills and knowledge required to elicit a family history and construct a three-generation pedigree using universal nomenclature is outlined, and inheritance patterns in relation to cancer predisposition gene changes are explained. An overview is included of currently known gene changes that increase the risk for common cancers and of genetic testing available in the UK. Integral to the chapter is the role of cancer genetic services in the UK. The chapter is supported with case studies to assist understanding.

In Chapter 3, the author considers the care of the childbearing woman with cancer. The prospect of having a baby is generally considered to be a happy event, but when a pregnancy is overshadowed with a diagnosis of cancer it brings with it a range of issues for the childbearing woman, her unborn baby, her family and those who provide care. Some of these issues relate to the woman's survival, as the death of the mother may need to be considered. Other issues relate to the treatment of the woman's cancer, raising questions about maternal and fetal harm and benefit. Thus, decision-making about the timing of treatment becomes significant. In this chapter the traditional role of the midwife, as being ‘with woman’, will be considered. This role is comparable with that of the palliative care nurse attending a person with cancer. In palliative care the concept of ‘being with’ assumes special importance, and the role of the midwife in caring for the childbearing woman with cancer may yet need to be addressed more explicitly through research and education.

In Chapter 4 the focus is on the importance of research in addressing the practical realities that patients with cancer are confronted with. Research into the nursing and caring needs of cancer patients is vital to their optimum management and the dissemination of best practice across professional care. In this chapter the authors illustrate the need for a methodical and comprehensive oral assessment tool for use in children with oral mucositis. In order to conduct clinical trials of mucositis prevention and treatment, reliable, valid, sensitive and easy-to-use instruments are required. Considerable effort has resulted in many different mucositis scales being developed, primarily for adults with cancer receiving chemotherapy and radiotherapy. Oral mucositis research in children receiving anticancer therapy has been impeded by the lack of an acceptable, appropriate assessment scale. The authors of this chapter are two of the experts who have been working together to produce an oral mucositis assessment scale that will be appropriate for use in children. This chapter describes the processes involved in the development of the Children's International Mucositis Evaluation Scale (ChIMES) that resulted from this research group.

In Chapter 5 the author outlines the diagnosis, symptoms and treatment of malignant brain tumours. Particular attention is given to the need for a multidisciplinary approach to care. The specific problems experienced by patients, such as physical dysfunction, communication difficulties, cognitive impairment and psychological distress, are explored. The management of seizures is discussed along with the implication of seizures for the patient's quality of life. Additionally radiotherapy, chemotherapy and other therapeutic agents are summarised in relation to survival, and quality of life. Finally there is a discussion on palliative care and end-of-life management for this group of patients.

In Chapter 6 the author looks specifically, and quite distinctly, from the perspective of the surgeon's role in cancer care, arguing that, to date, the surgeon has been pre-eminent in cancer treatment but that the role of the surgeon may be changing. Surgical decisions are now firmly and axiomatically embedded in the multidisciplinary team, in which the key role of the cancer clinical nurse specialist is acknowledged. Along with other advances in cancer care, the author outlines the exciting new surgical developments to consider, including minimally invasive, micro and robotic techniques for achieving an optimal surgical outcome for the patients with cancer.

In Chapter 7 the author addresses cancer pain – a significant cause of fear in cancer patients. Pain in cancer is much more than a physical sensation; it is an open floodgate for fear. Patients in pain may fear that the cancer is worsening, that they will die imminently or in distress, fear losing their composure with those they love, or even the fear that they are being punished for some misdemeanour which bodes badly for their afterlife. Identifying and addressing these fears is a challenging but important step to managing pain, and effectively managing physical pain will in turn help resolve the fear in patients and their families. This chapter explores the different aspects of pain, and demonstrates the use of the World Health Organization analgesic ladder. While the focus is on the use of opioids, the value of adjuvant medication in clinical management is also acknowledged.

Chapter 8 addresses the incidence and experience of fatigue in the cancer patient, which is one of the most commonly reported side effects following treatment. The potential causes are identified and a review of the literature evaluates management strategies. The author discusses whether nurses and allied health professionals can take a more active role in the ongoing care of patients with fatigue, as the ‘treatments’ that have the highest evidence base appear to be psychosocial support, education and exercise. If it is accepted that patients can expect optimal management of this condition, the National Health Service may have to adapt both existing service provision, and perhaps traditional nursing roles, to accommodate this.

Chapter 9 explores the nature of clinical trials in cancer research and the roles of the clinical research nurse within clinical trials. It discusses the role of the nurse in providing and communicating complex trial and treatment information to patients and families, carefully tailored and paced to meet individual needs. The author explores the role of the nurse as pathfinder – helping patients negotiate the web of information and services available to them – and examines the relationships developed between patients and research nurses in the clinical trial setting. The direct caregiver role and the provision of expert care are also discussed.

Chapter 10 illuminates the emotional nature of work involved in caring for individuals with cancer. Cancer care can provide nurses with much satisfaction but also has the potential to lead to emotional strain. The caring work involved in nursing patients with cancer can facilitate the development of strong professional relationships as nurses and patients communicate and interact with each other in the course of the patients' therapeutic journey. Furthermore, the communication with and support for the patients' families, that is very real in this area of nursing, enhances the nurse's role in the total care for the patients' wellbeing and adds to the emotional and psychological input of nursing work in this context. In this chapter the author presents an understanding of caring and emotional work within a therapeutic relationship in the context of nursing patients with cancer.

In Chapter 11 the authors show how the treatments for gastrointestinal cancer have increased survival, but not without side effects. With a greater emphasis on early diagnosis and treatment of gastrointestinal cancer, there has been a significant increase in the number of survivors. However, multimodal treatment of surgery, chemotherapy and abdominal and pelvic radiation is not without side effects, which can persist into the survival period after therapeutic interventions have been completed. The treatments can have adverse effects on the bowel, the urinary system and sexual function. Inevitably such side effects adversely affect the quality of life and have important implications for body image and self-esteem. This chapter addresses the complications that patients may experience following treatment for bowel cancer, and explores the current research in an attempt to minimise side effects and improve the quality of life.

In Chapter 12, the authors clearly illustrate the value of hope. This is considered important through all stages of the cancer journey; and no less at the time of end of life care. Access to competent and compassionate end-of-life care, where it is needed and when, is a key issue on the national and local agenda. This type of care addresses physical, psychosocial and spiritual issues. Evidence suggests that patients and families may remain hopeful if pain and symptoms are managed, if individuals feel valued, and when caring relationships are maintained. A range of frameworks and models, such as the NHS Gold Standards Framework and integrated care pathways, are being promoted to ensure a cohesive approach to end-of-life care. This closing chapter uses case studies to explore how such models and frameworks may assist healthcare professionals to sustain hope in patients with cancer and their families at the end of life.

References

Cameron DA, Howard GCW (2006) Oncology. In: Boon NA, Colledge NC, Walker BR (eds) Davidson's Principles and Practice of Medicine, 20th edn. Edinburgh: Churchill Livingstone.

Cancer Research UK (2009) http://info.cancerresearchuk.org/cancerstats/world/

Cancer Research UK (2010) http://info.cancerresearchuk.org/

Hanahan D, Weinberg RA (2000) The hallmarks of cancer. Cell100 (1): 57–70.

Marieb EN (2001) Human Anatomy and Physiology, 5th edn. San Francisco: Addison Wesley Longman.

Watson R, Fawcett TN (2003) Pathophysiology, Homeostasis and Nursing. London: Routledge.

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 alongside the specialist team (Wilson et al. 2002; Luker et al. 2003; DH 2007). Koldjeski et al. (2007) demonstrate how family-based oncology nursing can be essential for family wellbeing on the cancer journey. The support and supportive role of families may include children and young people whose needs are often difficult to express, as roles may seem suddenly to change and even to be reversed. Compas et al. (1994) found that the impact of a parent's cancer diagnosis related more to perceived seriousness rather than to the characteristics of the specific cancer, and differed according to the age and gender of both parent and child. Adolescent girls of mothers with cancer were found to experience more significant distress. Thastum explored children's scoping strategies when a parent had cancer and, although finding they ‘seemed to manage rather well’ (Thastum 2008: 123), it did depend on how well the parent(s) were themselves coping and supported.

Treatments do not always progress smoothly. Side effects can be debilitating (see Chapter 8) and any necessary delay in the next stage of treatment can add yet further stress. The role of the cancer nurse specialist becomes paramount at such times, and the primacy of the therapeutic relationship with the patient and family can positively impact on the maintenance of dignity and wellbeing. Setbacks are hard and treatment decisions may change and, alongside that, the means of coping. Barker (2000: 332) argued that such times can engender a sense of powerlessness, and all in the caring team need to recognise this and provide ‘the necessary human, interpersonal and intersubjective conditions for the development of a sense of security that the person not only seeks but needs to continue’, even in times of acute uncertainty. He continues that ‘maybe one of the virtues of caring is that it focuses the nurse's attention on … awareness of the person who is the patient and in so doing fosters an increased awareness of the whole of that experience for the person’ (Barker 2000: 332).

Throughout the illness trajectory many decisions will be made as to treatments and their side effects, symptoms and their management where, as Shaha et al. (2008: 61) argue, outcomes are uncertain and ‘few guarantees of success are possible’. Uncertainty is multidimensional and as Barker (2000: 332) states, it is part of the human condition. If well supported with information and emotionally, he argues, people have the ‘capacity to grow through experience’. The worst of times, with both its certainties and uncertainties, can bring out the best in people.

In the late 1990s the first Cancer Caring Centre was opened in the grounds of Edinburgh's Western General Hospital, the inspiration of Maggie Keswick Jencks, who died of breast cancer in 1995. Her vision was for an environment that would give emotional and psychological support, complementing, but also giving a respite from, the orthodox cancer treatment. It was to be an intimate setting where sufferers could both express, and be helped to manage, their fears and uncertainties, and a place where they and their families could just be themselves: husbands, wives, mothers, with lives to live. Such a setting could also offer means of helping relieve physical and emotional distress through relaxation techniques (Miller 2007). Maggie's Centre, as it became known, offers something that perhaps cannot be offered by the health service, and its success has led to a network of such centres opening across the United Kingdom and even further afield (Miller 2007). The philosophy underpinning such centres can also be seen as facilitating the resilience so needed on the cancer journey by both patient and family. Addressing this notion, Jacelon (1997) identified how some individuals seem to possess resilience to cope with, and ‘bounce back’ from, life's adversities. Resilience is seen as a ‘constellation of traits’ (1997: 128), some seemingly inherent in the individual such as a sense of autonomy, enthusiasm or humour; others may be more socially determined and arguably could be learned. Such resilience, if it can be fostered, can counter the sense of fragility and of strained personal resources that can occur on the cancer journey. Nurses and others in the caring team can be key in helping the cancer patient to achieve this or to detect where, on the continuum of response from vulnerability to resilience (Rutter 1985), the cancer patient might be at any one time.

Life After Treatment

Following treatment there are new challenges to face as, to some extent, the treatment period, short or extended, provides a ‘cocoon’ of care that now, if all has progressed optimally, must be left behind. As the time from treatment completion lengthens, the concept of survivorship grows. One of most positive developments in recent years has been that people can and do survive a cancer diagnosis and survivorship is a reality (Doyle 2008). This in itself has necessitated an exploration of what is meant by survivorship (the term first coined in the 1980s), when it begins, and what are the immediate and ongoing needs of those who can describe themselves as cancer survivors. Sontag (2001) was perceptive in her plea not to call those with cancer ‘victims’. Mullen (1985) described seasons of survival, beginning at diagnosis, as acute, extended and permanent, but this is a continuous process with needs ebbing and flowing as time passes. More conventionally, survivorship is seen as being disease-free for five years, after which, arguably, the risk of recurrence is less. Survivorship brings with it its own uncertainties and needs that must be specifically understood and provided for (Carter 1989; Vivar & McQueen 2005; Doyle 2008). This is an area for further research, and survivors' needs, although recognised, are not yet fully met (DH 2007).

Doyle (2008: 507) emphasises the need for all nurses to deepen their understanding of cancer survivorship needs and to take a leadership role in ‘influencing theory, research and practice’ around this ‘dynamic concept’. What is recognised is that survivorship has both positive and negative effects. The joy of surviving is tinged with the fear of recurrence, the irreversible and/or ongoing effects of treatments such as body image changes, pain and fatigue (see Chapters 7 and 8). The restoration of ‘freedom’ may be spoiled by feeling cast adrift from the support of healthcare professionals, who for some may have been like a second family (Rowland 2008). Some will express a sense of growth and new awareness (Barker 2000), but others may remain bitter at having had cancer at all and be unable to move on (Rowland 2008). Yet others sense that, in some ways, though no longer a cancer patient, they do not truly feel a survivor (Doyle 2008). Alongside remain the family and/or the carer who, in many ways, mirror the survivors as they too learn to incorporate this as part of their lives. As normal life resumes, Stott (2008: 61) wonders if the complexity of being a survivor is seen as such, commenting ‘Cancer and its effects cast a long shadow’ and it must not be assumed that ‘patients can just resume their lives as though cancer was just an unfortunate interlude’.

Cancer Recurrence

Survivorship can also embrace those who are not disease-free but who, despite treatment, have not seen the cancer eradicated, or for whom it has since recurred, to the same part of the body or spread to other parts of the body as metastases. Reaction to the return of cancer has not been much researched but Griffiths et al. (2008), looking at oral cancer recurrence, identify heightened vulnerability revealed in a mosaic of responses. These were not all negative, and included new-found coping mechanisms and improved relationships. It is undeniable that the return of cancer poses yet further challenges for its clinical and emotional management by the healthcare multidisciplinary team, but with advances in cancer care, many more now live with cancer, rather than see it as immediately mortal. Although the term ‘chronic’ now has its own critics, cancer can be seen as a chronic illness where, although cure may no longer be possible, quality of life can be maintained for a considerable time in a way that was inconceivable as little as 25 years ago.

Managing metastatic disease is not the same as managing a chronic condition such as diabetes mellitus, and the philosophy of the treatment alters, with the aim of gaining the best control over the cancer whilst not inducing a toxicity that detrimentally affects daily wellbeing. For many, further treatment may require hospital care where the oncology nurse, as a key member of the team, once again guides patients through the decision-making process in relation to the possibilities and realities. Increasingly, however, it is possible for treatments to be based at home (Marsé et al. 2004). Fitch and Maxwell (2008) maintain that nurses are often the most appropriate healthcare providers in supporting patients and their family at home, helping them to understanding their therapy, often able to act as intermediaries in communicating the needs and concerns of patients to their physicians. The patient and family have to acknowledge that some form of treatment will now be a fact of life, for the most part, for the future, however long it may be. Whittemore and Dixon (2008), though not looking specifically at cancer as a chronic illness, explored how people with a chronic illness integrated this reality into their lives. Despite effort and motivation this was found to be hard as they struggled to live life rather than live illness. Such research serves to demonstrate that success in managing formerly life-limiting disorders brings its own challenges for both the participants and all who care for and about them. At this stage of the journey, what might matter most is the ability of healthcare professionals, and particularly the nurse, just to acknowledge a shared humanity and the capacity ‘to presence oneself’ alongside the patient and family (Benner & Wrubel 1989: 13).

The End of the Survival Journey