Psychosocial Issues in Palliative Care Psychosocial Issues in Palliative Care A community- based approach for life- limiting illness THIRD EDITION Edited by Mari Lloyd- Williams Professor and Consultant in Palliative Medicine Academic Palliative and Supportive Care Studies Group University of Liverpool 1 1 Great Clarendon Street, Oxford, OX2 6DP, United Kingdom Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries © Oxford University Press 2018 The moral rights of the authors have been asserted First Edition published in 2003 Second Edition published in 2008 Third Edition published in 2018 Impression: 1 All rights reserved. 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The authors and the publishers do not accept responsibility or legal liability for any errors in the text or for the misuse or misapplication of material in this work. Except where otherwise stated, drug dosages and recommendations are for the non- pregnant adult who is not breast- feeding Links to third party websites are provided by Oxford in good faith and for information only. Oxford disclaims any responsibility for the materials contained in any third party website referenced in this work. To my parents, sister, husband, children and friends for all their love, care, support and guidance and for forgiving me for probably spending far too much time on my work. Foreword The discipline of palliative care is primarily focusing on the patient who has the disease –whether it be cancer or other chronic diseases. It is crucial to take psy- chosocial issues into consideration in order to deliver optimal palliative care. The patient centered approach ought to be combined with a disease centered approach in order to deliver optimal care. This combined approach is expected from the patients, the family and from the society. Most textbooks in medicine focus mainly on the disease approach. The approach is well covered, including new knowledge about the pathology, the epidemiology, the diagnosis and the treatments of the disease. However, know- ledge and competence in psychosocial issues are needed in order to combine the disease and patient centered approach; this combination is seen in “early integration of palliative care”. Already in 2002 WHO changed some of the content of their definition of palliative care. It clearly states some fundamental issues related to organization, content and competence in palliative care: u For patients and families “facing the problems associated with life threatening illness” u From an organizational perspective: “palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.” u It should be performed “through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment” u It constitutes a broad approach to the patients ”assessment and treatment of pain and other problems, physical, psychosocial and spiritual” Four main issues are debated today with background in the content of the WHO definition. These issues are also relevant for the need of psychosocial care: u Integration of palliative care early in the disease trajectory u A correct use of diagnostic tools , and methods to identify patients in need of treatment u Family involvement – a life threatening disease will also have impact on the family u Patients with life threatening diseases are often suffering from several symptoms and signs in parallel of physical, psychosocial and spiritual nature. viii FOREWORD Psychosocial issues in palliative care is content wise one of the main pillars of modern palliative care. This book covers main areas of psychological and social care. Many of the chapters give excellent updates, and more than that; the book is discussing fun- damental approaches to patient care and health care. The need for a community based approach is necessary in order to reach a basic goal in palliative care – to give the patients the possibility to stay at home as much and long as possible, and to die at home if desired. The latter goals will probably need to be facilitated by involving end of life care in community care as well as a part of the national public health policies. This book is therefore highly relevant for clinicians in general and even more for palliative care specialist. Preface I feel privileged to be writing a preface to the third edition of ‘Psychosocial Issues in Palliative Care: A community based approach’, and to be editing an edition that truly reflects the huge changes that have taken place in palliative care since the first edition was being prepared for production in 2002. In 2002, palliative care was still a fairly new speciality and unheard of by many people including clinicians. At that time the definition of palliative care was as it is now, but the reality was that palliative care was confined in the vast majority of cases to those dying of cancer. In the last fifteen years we have seen a much needed shift in understanding and acceptance that palliative care can offer so much to patients living with all life limiting conditions and provide much needed support for their families. This new edition contains chapters exploring neonatal palliative care to supporting usually older patients living with dementia and frailty. The global increase in longevity brings with it increasing demands on health and social care and the realisation that what many people need within our communities is a compassionate neighbour who is there to support, help and guide and by empowering volunteers to work alongside health and social care professionals within communities, palliative care in its broadest sense can be extended to more people with a possible reduction in demand for profession- ally provided health and social care as a consequence. The pioneering work of Suresh Kumar in Kerala shows clearly how community volunteers can deliver total palliative care within their community. However much still needs to be done— the majority of those training in health and social care will have some exposure to palliative care, yet we still have situations where palliative care is not considered or considered too late to make a difference and where families are distressed and humiliated by the care, or lack of care given to family members in the last days and weeks of life. Yes, this lack of care is often due to palliation of physical symptoms but frequently also due to the lack of consideration and attempt to palliate the myriad of psy- chosocial aspects that make for good palliative care not only at the end of life but to all those living with life-l imiting illness. It is with all of these situations in mind that the third edition of Psychosocial Issues in Palliative Care: A commu- nity based approach has been written and the aim is that the book is accessible to patients, families, volunteers as well as health and social care professionals.