Key Concepts in Palliative Care

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Edited by: Moyra A. Baldwin & Jan Woodhouse

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  • SAGE Key Concepts

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    The SAGE Key Concepts series provides students with accessible and authoritative knowledge of the essential topics in a variety of disciplines. Cross-referenced throughout, the format encourages critical evaluation through understanding. Written by experienced and respected academics, the books are indispensable study aids and guides to comprehension.

    Copyright

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    About the Editors and Contributors

    Editors

    Moyra A. Baldwin, BSc (Hons), MMed Sci. (Clinical Nursing), RN (Adult), SRN, RCNT, RNT, Dip N (London), Cert Ed, Dip Adv Nursing Studies is Senior Lecturer and Programme Leader of the Post Graduate Certificate in Health and Social Care Commissioning, Faculty of Health and Social Care, University of Chester.

    Jan Woodhouse, MEd, BN(Hons) Dip N, PGDE, RGN, OND, FETC is Senior Lecturer, Department of Professional Development in Health Care, in the Faculty of Health and Social Care, University of Chester.

    Contributors

    Julie Bailey-McHale, MSc, BA (Hons), PG Dip Ed, RMN is Senior Lecturer in Mental Health, Isle of Man Department of Health and Social Security (DHSS).

    Barbara Beard, MA(Medical Ethics), BA, RGN, RNT, RCNT, ENB 931, Cert Counselling(AEB) is Course Leader, MSc Supportive and Palliative Care at Sheffield Hallam University.

    Catherine Black, MA Ed, BA (Hons) Nursing, RN, RNT, Dip in Health Services Management is Senior Lecturer, Isle of Man Department of Health and Social Security (DHSS).

    Adrian Bunnell, MSc (Advance Practice), BSc Occupational Therapy is Clinical Specialist Occupational Therapist in the Palliative Care Community Therapy Team, Western Cheshire Primary Care Trust at the Hospice of the Good Shepherd, Chester.

    Dorothy Carter is Chair of FOCUS – Forum of Carers and Users of Services – she is also a former carer and former manager at Age Concern, Warrington.

    John Costello, RN, PhD is Senior Lecturer in palliative care nursing, School of Nursing, Midwifery and Social Work, University of Manchester.

    Sonya Currey, RN (Adult), Dip HE Nursing Studies, BSc (Hons) Specialist Practitioner District Nursing is a District Nurse Sister, Warrington Community Service Unit.

    Andrea Dean, Dip HE Nursing Studies, BSc (Hons) Professional Practice (Nursing) is a Research Nurse at Roy Castle Liverpool Lung Project, University of Liverpool Cancer Research Centre.

    The Reverend Ian M. Delinger, BSc, BTh (Cantab) is Assistant Chaplain, University of Chester.

    John Ellershaw is Professor of Palliative Medicine and Director of Marie Curie Palliative Care Institute at the University of Liverpool.

    Shirley Firth, BA (Hons), PG Cert Social Work for Developing Countries, LSE, MA, PhD, SOAS, is a retired writer, lecturer and workshop facilitator. Oxfam, Florissant College, St. Louis, USA; Open University; Universities of Southern Maine (USA), Surrey, Reading, Winchester (King Alfred's College), Southampton.

    Yvonne Flood, RGN, RSCN, BSc Children's Community Nursing, PGCE HE, is Lecturer in the School of Nursing and Midwifery at Keele University.

    Janice Foster, SRN, DPSN, BSc Hons, RMA is Inpatient Unit Manager, St Ann's Hospice, Manchester.

    Helen Fruin, BA (Hons), CQSW, Dip Soc, Admin, PGCE is Senior Lecturer in Practice Learning, Faculty of Health and Social Care, University of Chester.

    Joanne Greenwood, MSc, PGCE, BSc (Hons), DipHE (Dist), RGN is Senior Lecturer, Faculty of Health and Social Care, University of Chester.

    Richard Griffith, LLM BN DipN, PgdL, RMN, RNT, Cert Ed is Lecturer in Health Law, School of Health Science, Swansea University.

    Peter Hartland is Chief Executive of St Luke's Hospice, Sheffield.

    Amanda Humphreys, RGN (Adult), Cert Prof Practice, RGN (Childrens), Cert HE, Dip Prof Practice, BSc (Hons), Lecturer / Practice Educator, MA is Team Leader at Hope House Children's Hospice in Shropshire.

    Claire Jones, MSc Advanced Practice, Diploma in Physiotherapy is Clinical Specialist Physiotherapist in the Palliative Care Community Therapy Team, Western Cheshire Primary Care Trust and at the Hospice of the Good Shepherd, Chester.

    Steve Kirk, SRN, RMN, RNMH, DipHE Palliative Care, MBA was formerly the Chief Executive of St Luke's Hospice, Sheffield.

    Dr Richard J. Latten, MB ChB, MRCP (UK) is Clinical Fellow in Palliative Medicine at the Marie Curie Palliative Care Institute, University of Liverpool.

    Mzwandile A. Mabhala, FRIPH, MSc (PH), BSc (Hons), PG Cert Ed is Senior Lecturer in Public Health and Epidemiology, Faculty of Health and Social Care, University of Chester.

    Karen Manford-Walley, MEd, BSc(Hons), SCPHN Occupational Health, BSc (Hons), DipHE, RGN, Onc Cert, FP Cert, Gradi OSH, FHEA is a Senior Lecturer, University of Chester and Oncology Lecturer, Clatterbridge Centre for Oncology, Wirral.

    Elizabeth Mason-Whitehead, PhD, BA(Hons), PGDE, SRN, SCM, RHV, ONC is Professor of Social and Health Care at the Faculty of Health and Social Care, University of Chester.

    Jill McCarthy, EdD, MSc, BEd (Hons), RGN, SPQ (DN), RNT is Senior Lecturer, Faculty of Health and Social Care, The University of Chester.

    Deborah Murphy is National Lead Nurse LCP, Associate Director, Marie Curie Palliative Care Institute, University of Liverpool.

    Stephanie Neill, MSc Accounting and Finance, Diploma in Management Studies (DMS), Certified Diploma Accounting and Finance (C. Dip AF), HNC Business Studies, is Treasurer and service user at FOCUS.

    Sue Padmore, Med, BA (Hons) RM, RN, Diploma in Holistic Therapies (IIHHT) is Senior Lecturer, Faculty of Health and Social Care, University of Chester.

    Joy Parkes, MSc Clinical Skills In Practice; BSc (Hons) Nursing Studies; RNT; RN; RM; IIHHT Dip in Health and Holistic Therapies, is Senior Lecturer Adult Nursing and Practice Lead at the Faculty of Health and Social Care at the University of Chester.

    Natalie Pattison, RN, BSc (Hons), MSc, Cancer (Adult) Diploma is Clinical Nursing Research Fellow at the Royal Marsden Hospital, Surrey.

    Sheila Payne, BA (Hons), RN, Dip N, PhD, C Psychol is Help the Hospices Chair in Hospice Studies, International Observatory on End of Life Care, Division of Health Research at Lancaster University.

    Sue Phillips, RGN, RHV, BA (Hons) Nursing Education, MSc is Senior Lecturer, Faculty of Health and Social Care, University of Chester.

    Lynda Prescott, MA, BA (Hons), RNT, RN is Nurse Educator and Team Leader, Sydney West Area Health Service in New South Wales, Australia.

    Jane Quigley, MSc, PGDE, RGN, DN, Nurse Prescribing is Senior Lecturer, Faculty of Health and Social Care, University of Chester.

    Sue Read, PhD, MA, RNMH, Cert Ed (FE), Cert Bereavement Studies is Reader in Learning Disability Nursing at Keele University.

    Victoria Ridgway, RN, BSc (Hons), MA Gerontology, PGDE is Programme Leader/Senior Lecturer, Faculty of Health and Social Care, University of Chester.

    Pat Rose, MSc, BSc (Hons), Dip N, PG Cert Ed, RHV, RN (Child), RN (Adult) Honorary Research Fellow, Faculty of Health and Social Care, University of Chester.

    Dion Smyth, RGN, PG Dip, Cert Ed, ONC is Lecturer-Practitioner in cancer and palliative care at Birmingham City University.

    Virginia C. Williams, MSc PG Cert Palliative Care, BSc (Hons) Specialist Practitioner, RN, Dip HE (Nursing) is Clinical Nurse Specialist Palliative Care (Macmillan) for Liverpool Primary Care Trust, Edge Hill Health Centre in Liverpool.

    Debbie Wyatt, MSc, BA (Hons), DPSN, Cert Ed, RNT, RGN, ENB 237 is Senior Lecturer at Faculty of Health and Social Care, University of Chester and Macmillan Lecturer at Clatterbridge Centre for Oncology, Wirral.

    Preface

    The concept of palliative care has grown over the last half-century, from local provision at dedicated hospices looking after patients with cancer, to a global awareness that considers all the measures needed at the end of life, irrespective of the diagnosis. Subsequently the knowledge base of palliative care has expanded exponentially. It has moved from the minimum of giving effective pain relief by medical staff to embrace a wide range of approaches by all members of the multidisciplinary team, and others, who care for the patient and their carers. It has also moved from just being an end-of-life service to one that is considered from the moment of diagnosis to the subsequent bereavement period of the carers. A glance down the list of key concepts on the contents page will give testament to the diversity of knowledge that palliative care encompasses.

    One of those concepts is that of research and today there is much emphasis placed on evidence-based practices, whatever discipline you happen to be working in. Yet palliative care cannot always be guided by the gold standard of research, randomised controlled trials, because of the ethical implications and time-bound aspects of such methods. Hence evidence in palliative care is often gathered by ‘what works for the patient, not other patients but this patient’. Hence there is a patient-centred approach that naturally emerges. The use of the Internet has enabled a global sharing of what works and what doesn't and this allows a further growth of knowledge. It also gives weight to opinion-based arguments, where the palliative care expert is drawing on known case studies and observations. As such, this flies in the face of the concept of evidence-based practices but palliative care teams are pragmatic and will try most things if it brings a benefit to the patient. Hence those readers expecting to find treatment protocols in the concepts of symptom management chapters are going to be disappointed, instead they are encouraged to view the patient holistically – to consider all the elements that impact on the patient socially, physically, psychologically and spiritually.

    When this is done palliative care practitioners will probably realize that there is a limit to their knowledge and that there is a need to involve others in the multidisciplinary team. Therefore the concepts in this book are drawn from a variety of professions and levels within those professions, which hopefully demonstrates that there has been a team effort in the formulation of the content.

    One concept that may seem to be missing is that of physician-assisted suicide and euthanasia, although it is touched upon within a few of the chapters, and that is because this is a book aimed at the practitioner, predominately in the United Kingdom, where the topic is frequently debated but is not enshrined in law. If or when such legislation is passed then it will need to be included as a topic in its own right. Until then the practitioner should be aware of the debates that are going on around this highly emotive topic for sooner or later you can be sure that a patient, or their relative, is going to raise it when faced with a life-limiting diagnosis.

    The concepts contained within this book aim to ‘give a little about a lot’ rather than ‘a lot about a little’, they are an overview of the elements of palliative care and we hope that the reader finds plenty to stimulate thought, to compare aspects to practice, and to debate with others.

    Moyra A.Baldwin and JanWoodhouse

    Acknowledgements

    We wish to thank our palliative care colleagues who have contributed to this book and have been willing to pass on their expertise and knowledge to others.

    Special thanks go to Barbara Holliday, whose quiet patience and diligence in all things administrative have helped in the completion of this book.

    We would also like to thank our colleagues in the Faculty of Health and Social Care, University of Chester, as well as those at Sage – Emma Paterson, Alison Poyner and Zoë Elliott-Fawcett for their ongoing encouragement, support and guidance.


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