End of Life Care in Neurological Disease

Transcription

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2 End of Life Care in Neurological Disease

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4 David Oliver Editor End of Life Care in Neurological Disease

5 Editor David Oliver BSc FRCP FRCGP Wisdom Hospice Rochester Kent UK ISBN ISBN (ebook) DOI / Springer London Heidelberg New York Dordrecht Library of Congress Control Number: Springer-Verlag London 2013 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, speci fi cally the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on micro fi lms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. Exempted from this legal reservation are brief excerpts in connection with reviews or scholarly analysis or material supplied speci fi cally for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Duplication of this publication or parts thereof is permitted only under the provisions of the Copyright Law of the Publisher s location, in its current version, and permission for use must always be obtained from Springer. Permissions for use may be obtained through RightsLink at the Copyright Clearance Center. Violations are liable to prosecution under the respective Copyright Law. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a speci fi c statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. While the advice and information in this book are believed to be true and accurate at the date of publication, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Printed on acid-free paper Springer is part of Springer Science+Business Media (

6 Foreword In 2010, a group of health and social care professionals, together with representative patient organisations, met to consider the needs of people with progressive neurological disease. The meeting was established by the Department of Health and the National End of Life Care Programme, and over the next year the group produced a report entitled End of life care in long term neurological conditions a framework for implementation. The aim was to encourage health and social care professionals to start to consider end of life issues for this patient group and look at how they could collaborate for the bene fi t of patients and their families. This book has arisen from the work in producing the report. The group members have been involved in developing the sections into the chapters. We hope that the book will stimulate services to look at how they can collaborate to improve end of life care, so that the quality of life of patients and their families develop across all areas elderly care medicine, neurology, rehabilitation medicine, primary care, specialist palliative care, social care and voluntary organisations and people with neurological disease will receive the co-ordinated and excellent care they require at the end of life. I would like to thank all the authors involved in this project, those who helped in the production of the original report and the production team at Springer for all their help and enthusiasm in this project. Rochester, Kent, UK Dr. David Oliver v

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8 Contents 1 End of Life Care Tes Smith and Eleanor Sherwen 2 End of Life Care in Neurological Disease David Oliver and Eli Silber 3 Communication Jenny Smith, Debi Adams, and Colin W. Campbell 4 Physical Symptoms in Neurological Conditions Mark Lee 5 Holistic Care: Psychosocial and Spiritual Aspects Colin W. Campbell, Barbara J. Chandler, and Sue Smith 6 Multidisciplinary Care David Oliver and Sally Watson 7 Advance Care Planning Simon Chapman 8 Care at the End of Life Nigel P. Sykes 9 Carers Cynthia Benz and Debra Chand 10 Future Developments in Care: National Strategy and Commissioning Claire Henry and Beverley Hopcutt 11 End of Life Care in Progressive Neurological Disease: Australia Susan Mathers vii

9 viii Contents 12 International Aspects of Care: Europe Simone Veronese 13 International Aspects of Care: Africa Liz Gwyther 14 Conclusion David Oliver Index

10 Contributors Debi Adams, RN, B.A. (Hons) Clinical Nurse Specialist in Palliative Neurology, St. Catherine s Hospice, Scarborough, North Yorkshire, UK Cynthia Benz, BEd Hons, M.A., Ph.D. Volunteer for the Multiple Sclerosis Society, the National Council for Palliative Care and Dying Matters Coalition, UK Colin W. Campbell, MBChB, FRCGP, FRCP Medical Director and Palliative Medicine Consultant, St. Catherine s Hospice, Scarborough, North Yorkshire, UK Debra Chand, B.Sc., M.B.A. The PSP Association, Towcester, Northamptonshire, UK Barbara J. Chandler, BMedSci, M.B.B.S., M.D., FRCP Raigmore Hospital, Inverness, Scotland, UK Simon Chapman Director of Policy & Parliamentary Affairs, The National Council for Palliative Care, London, UK Liz Gwyther, MB ChB, FCFP, M.Sc., Pall Med Hospice Palliative Care Association of South Africa, Pinelands, South Africa Claire Henry, RGN, PgDip, B.Sc. National End of Life Care Programme, Leicester, Leicestershire, UK Beverley Hopcutt Therapy Service, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK Mark Lee, MBChB, MRCP, M.D. Department of Palliative Care, St Benedict s Hospice & City Hospitals, Sunderland, Tyne and Wear, UK Susan Mathers, MB ChB, MRCP (UK), FRACP Neurology Unit, Calvary Health Care Bethlehem, Melbourne, Victoria, Australia ix

11 x Contributors David Oliver, B.Sc., FRCP FRCGP Consultant in Palliative Medicine, Wisdome Hospice, Rochester, Kent, UK Honorary Reader, Centre for Professional Practice, University of Kent, Chatham, Kent, UK Eleanor Sherwen, RGN, B.Sc. (Hons), Palliative Care, PG Cert ClinEd National End of Life Care Programme, Ongar, Essex, UK Eli Silber, MBBCh (Wits), FCP (Neuro) SA M.D. (Lond), FRCP Kings College Hospital, London, UK Jenny Smith, B.Sc. (Hons), MBChB MRCP Specialty Registrar in Palliative Medicine, St Gemma s Hospice, Leeds, Yorkshire, UK Sue Smith, M.Sc. Motor Neurone Disease Association, Leeds, West Yorkshire, UK Tes Smith, B.A. (Hons), M.A. Macmillan Cancer Support, Ongar, Essex, UK Nigel P. Sykes, M.A., FRCP, FRCGP St. Christopher s Hospice, London, UK Simone Veronese Department of Palliative Care, FARO Foundation, Turin, Italy Sally Watson, M.A., Ph.D. Director of Executive Education, Lancaster University Management School, Lancaster, Lancashire, UK

12 Chapter 1 End of Life Care Tes Smith and Eleanor Sherwen Abstract The concepts and fi elds of palliative and end of life care have a long and complex history, and a historical overview both in terms of how death has been viewed in society and some of the changes is helpful in understanding where we are now. This may be linked to the development of the practice of end of life care through the hospice movement and in fl uential events to present day, including the End of Life Care Strategy. The de fi nitions as to end of life and palliative care may be seen as signposts rather than de fi nitive statements. The content of this chapter will in the main be generic as it is acknowledged that the in-depth exploration as to what is end of life care in relation to neurological conditions will contain in the chapters to follow. Keywords Palliative care End of life care Neurological Overview of care ELCS Historical Overview Death is both absent and present in contemporary society. There is continuing evidence that we push it away, sometimes shutting it out of sight by the very structures set up in health and social care to deal with dying [ 1 ]. The absent yet present notion about dying captures many schools of thought around end of life and palliative care. Many books have begun with the historical overview of where palliative medicine, also referred to as palliative care, has been developed from [ 1 4 ]. T. Smith, B.A. (Hons), M.A. (*) Macmillan Cancer Support, Ongar, Essex, CM5 0TD, UK tes.smith@me.com ; tsmith@macmillan.org.uk E. Sherwen, RGN, B.Sc. (Hons) Palliative Care, PG Cert ClinEd, National End of Life Care Programme, Ongar, Essex, UK D. Oliver (ed.), End of Life Care in Neurological Disease, DOI / _1, Springer-Verlag London

13 2 T. Smith and E. Sherwen It is the hospice movement that is intrinsically linked to palliative and end of life care by many commentators. A brief exploration regarding the evolution of hospices shows that at the beginning of the nineteenth century hospice care was changing and evolving, having moved from the monasteries providing rest shelter and food in the twelfth to fourteenth centuries to places that cared for the dying from the middle of the seventeenth century onward. Help the Hospices advise caution in comparing the connection between the past and present hospices, in that they reveal hospices in the early times could be said to contain the poor and downtrodden and were often places for the spread of diseases and inde fi nite stays. This is in contrast with the hospices today that tend to focus on short-term care for those close to or at end of their life. Hospices today do vary in the services that offer the local population, many of them offering day therapy, specialist advice and complex symptom management, hospice at home, and psychosocial and bereavement services, to name but a few. In the UK, the establishment of hospices can be seen in Edinburgh in 1885, followed by several in London: the Hostel of God (now Trinity Hospice) in 1891, Saint Luke Home (latterly St Luke hospital) in 1892, accredited as the site of fi rst medical professional on staff and 1905 saw St Joseph s Hospice Hackney take in its fi rst patient, a tram driver with incurable lung disease [ 5 ]. This time also saw the beginning of the recognition of the need for specialist homes and home care services for those with advanced cancer in the charitable sectors. Hence, The Macmillan Cancer Relief began as the National Society for Cancer Relief in 1911 and the Marie Curie Memorial Foundation in 1948 [ 5 ]. Sue Ryder homes began to emerge in the 1970s [ 6 ]. These historical markers provide an understanding as to the important connections that have emerged and where and how current thinking has developed. Neuberger, sites death and the wish to have a good death as a concept with its beginnings in ancient times and brings this forward to the Victorian view of a good death being pain free, surrounded by family, prayers and it not being a fearful event [ 2 ]. She further suggests that following this the notion and names given to a person approaching death and dying begun to be more obscure and as a result people became less comfortable with death, dying and talking about it. Finally she draws a connection to the brutality and senselessness of war deaths further contributing to the change in attitudes to death and dying, which had turned from a Victorian celebration of life to a culture of not talking about it or telling people that this is in fact what they were doing dying [ 2 ]. This obscurity is further borne out by the fact that there are over 200 euphemisms for death in the English language. Dying Matters suggests that the practice of using euphemisms for death is likely to have originated with the belief that to speak the word death was to invite death itself. Further it is suggested that this may explain why death is a taboo subject in many Englishspeaking cultures, and that the use of euphemisms often involves metaphors for the person moving into another state, or another place, which seems to be more acceptable for those dealing with bereavement than using the term dead [ 7 ]. It has therefore been suggested that by the mid-twentieth century the changes to medicine and health care were having an effect on end of life care. There was

14 1 End of Life Care 3 increasing emphasis on cure and rehabilitation, while death in hospital as opposed to at home was becoming the norm. Subsequently four signi fi cant changes happened: A shift in professional literature from anecdote to systemic observation. A new way of dying began to emerge, re fi ning ideas about the dying process and exploration as to the extent an individual should know about their condition. An active rather than passive approach to the dying was promoted with the encouragement of ways to continue to care for people up to and beyond end of life. An increasing awareness of the connections between the physiological and psychological being, thus illuminating the concept of suffering and the need for medical professional need to consider the holistic approach in the treatment of the dying. When considering a societal approach to death, Kubler-Ross has been attributed with moving the understanding and the culture around death in the late 1960s toward a more death aware society, as she recognized that death had become dehumanized and mechanical and called for a rejection of this and a move toward a more proper response to death and dying [ 8 ]. Kubler-Ross described a society that had become more interested in the masses than the individual and cure and/or keeping alive as opposed to talking the situation through sensitively with the patient and enabling discussions around the illness, treatments, and prognosis [ 9 ]. It is this discourse that continues to fuel many debates as to who is responsible and when and where should end of life and care planning discussions start. The current thinking on this will be more explored brie fl y in this chapter and discussed in more detail in subsequent chapters. It is extensively recognized and documented that Dame Cicely Saunders was instrumental in the emergence of the hospice movement that is currently in place and continues developing today. This work commenced in the 1950s with her initial aspirations to improve the care of those who were dying of malignant disease. Dame Cicely pioneered and developed effective techniques relating to pain control. It was in that fi eld that she recognized and proved the validity and effectiveness of administering analgesia on a regular basis and the positive effects it was having on the lives of those patients she was caring for. Dame Cicely Saunders was herself trained in three different professions nursing, social work, and fi nally a medical doctor all in her quest to improve the dying experience for the individual [ 10 ]. She opened St Christopher s Hospice in 1967 which is often referred to as the fi rst of the modern hospices seeking to combine three key principles: excellent clinical care, education and research, and as a center of excellence in a new fi eld of care. St Christopher s success became the stimulus for hospice development in the UK and abroad and continues to be at the forefront of those same principles today [ 3 ]. Therefore, historically attitudes to death and dying changed into one of where death was to be feared rather than celebrated; this correlated with the medical profession pursuing cure for all as opposed to acknowledging when curative interventions were no longer an option. The collision of these changes led to a society and

15 4 T. Smith and E. Sherwen medical profession (among others) that had begun to avoid discussions about death and dying. In the early 1970s, the fi rst large-scale epidemiological survey led by Professor Ann Cartwright reported on the experiences of people and their families in the last year of life. This was revised in 1987 with a further sample. Several changes were identified; people were: Dying alone in increasing numbers Older with prolonged and unpleasant symptoms In institutional and hospital settings Showed a greater awareness of the disease and dying [ 3 ] The latter issue, with regard to greater awareness, is linked to changing practice in the direction of increasing open and honest communication. Holloway notes that there were caveats attached around the basis for that openness in that some people guessed rather than were told they were dying and that people were more likely to have been told about their condition as opposed to being told it would lead to death [ 1 ]. The 1980s saw continued growth within this fi eld of palliative care and saw the launch of a scienti fi c journal related to this newly emerging area of medicine and also the recognition of palliative care as a specialist area. In 1985, the Association for Palliative Medicine of Great Britain and Ireland was established. Following further debates, in 1987, palliative medicine was established as a subspecialty of general medicine [ 3 ]. The emergence of the speciality oncology in which palliative care is rooted initially showed little interest in the care of the dying according to Clark [ 3 ] saw the appointment of a cancer tsar Professor Mike Richards. His role was to reform and improve cancer services building upon the work of the Calman-Hine report and the UK Government s Cancer plan. The Calman-Hine report of 1995 examined cancer services in the United Kingdom and proposed a restructuring of cancer services to achieve a more equitable level of access to high levels of expertise throughout the country. The report further highlighted the need for user involvement by recommending that cancer services should be patient centered, and the Cancer Plan also recognized this as well as highlighting that cancer services should be a national priority [11 ]. The outcome was to implement a program of reforms to cancer services which has at its core palliative care services. This work in collaboration with other stakeholders developed the fi rst national strategy for end of life care [ 3 ]. This End of Life Care Strategy was published in 2008, with the strap line promoting high quality care for all adults at the end of life [ 12 ]. The strategy heralded a change to the emphasis placed on end of life care which then became highlighted as one of the eight clinical pathways to be developed by each of the strategic health authorities as part of the Lord Darzi Next Stage Review. The NHS Confederation noted, On 3 July 2008 the Department of Health published its vision for primary and community care as part of the NHS Next Stage Review, setting out the future direction for primary and community care in England. NHS Confederation chairman, Bryan Stoten, said: This strategy