Palliative Care in Amyotrophic Lateral Sclerosis: From Diagnosis to Bereavement / Edition 2

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Palliative Care in Amytrophic Lateral Sclerosis remains the only book focusing on the palliative care aspects of treating a patient with ALS (or Motor Neurone Disease), and this second edition brings this important text up to date. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow the disease. Palliative care must therefore be integral to the clinical approach to the disease. The new subtitle, From Diagnosis to Bereavement, reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease.

Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families, culminating in a discussion of bereavement. The experience of patients and families are considered and case studies are provided to show the practical application of the theoretical knowledge. Different models of care are explored, and this new edition utilises the increase in both the evidence base and available literature on the subject. Additional chapters on nursing, spiritual care, decision making, and ethical issues surrounding end of life care ensure that this new edition remains the essential guide to palliative care in ALS. This is a practical book to be used in the day-to-day care of patients with ALS. It will therefore appeal to all members of the multidisciplinary palliative careteam, and neurologists dealing primarily with the management of the disease. It will also prove an invaluable reference for family doctors supporting an ALS patient.

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Editorial Reviews

From the Publisher

"This book is well written and thorough. I am not aware of another book that provides such a comprehensive treatment of the palliative aspects of ALS in a way that the clinician can use it often."--Doody's

Doody's Review Service
Reviewer: Bonnie Gerecke, MD (University of Maryland School of Medicine)
Description: This book on the care of the patient with ALS includes a comprehensive description of symptomatic treatments and of the management of the psychosocial aspects of the disease as they relate to the patient, the family, and the treating physician.
Purpose: It is intended to provide healthcare providers with an up-to-date resource to which they can refer when treating a patient with ALS. It also is intended to provide guidelines for therapies based on both scientific data and clinical experience.
Audience: The book is written for any healthcare provider involved in the care of the patient with ALS, including physicians, nurses and nurse practitioners, speech and language therapists, physical and occupational therapists, and those involved with palliative care.
Features: A basic primer on motor neuron disease begins the book. The first chapter is appropriately brief and describes the potential pathophysiology of the disorder and potential therapies. The rest of the book is dedicated to describing the management of the patient with ALS. Each chapter is devoted to a different aspect of the disease, varying from psychosocial issues to symptomatic therapies. The chapters are short but cover the basics. Several of the chapters have lists and algorithms that are very practical and which the physician can apply directly during clinical care. Chapter three includes a detailed checklist for planning end-of-life decisions and advanced directives in ALS that can easily be used by the treating physician as a reference when discussing these issues with the patient. Other charts display recommendations for medications, including specific dosages, which is also easy to apply clinically. The references are extensive and include recent data to support the recommendations. This is particularly relevant in the chapter on the management of respiratory symptoms as the more recent literature has supported the role of noninvasive ventilation for prolongation of life and improved quality of life in appropriate patients. Even the appendixes are useful for practitioners who may need additional support for their patients or who may want to get up-to-date information on the latest scientific data from the listed websites.
Assessment: This book is well written and thorough. I am not aware of another book that provides such a comprehensive treatment of the palliative aspects of ALS in a way that the clinician can use it often. As a young neuromuscular specialist just starting out with a particular interest in ALS, I have used the book as a resource for the management of my own patients. I would encourage other healthcare providers who are involved in the care of ALS patients to read this book.
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Product Details

  • ISBN-13: 9780199212934
  • Publisher: Oxford University Press
  • Publication date: 12/28/2006
  • Edition description: REV
  • Edition number: 2
  • Pages: 368
  • Product dimensions: 6.30 (w) x 9.30 (h) x 1.00 (d)

Meet the Author

David Oliver, Consultant Physician in Palliative Medicine, Wisdom Hospice, Rochester, and Honorary Reader, University of Kent, UK,Gian Domenico Borasio, Professor and Chair in Palliative Medicine, University of Lausanne, Centre Hospitalier Universitaire Vaudois, Switzerland,Wendy Johnston, Associate Professor Neurology and Director of ALS/Neuromuscular Programme, University of Alberta Hospital, Edmonton, Canada

David Oliver is Medical Director and Consultant Physician in Palliative Medicine at the Wisdom Hospice, Rochester and Honorary Reader at the Centre for Professional Practice at the University of Kent. He is Visiting Professor at the Medical Faculty at the University of Zagreb, Croatia and Adjunct Associate Professor at Curtin University, Perth.
He qualified at University College Hospital, London and then trained as a GP. He was Registrar and Senior Registrar at St Christopher's Hospice London and was appointed to his present post in 1984.
He has lectured and published widely on neurological palliative care, particularly on the care of people with motor neurone disease, including as principal editor of "Palliative care in ALS - from diagnosis to treatment". He is chair of the European Association for Palliative Care Taskforce on Neurology and Palliative Care and was Clinical Lead for "End of life care in long term neurological conditions - a framework for implementation".

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Table of Contents

Preface     vii
List of Contributors     ix
Amyotrophic lateral sclerosis/motor neuron disease   Christopher Shaw     1
Palliative care   David Oliver     19
Communication: breaking the news   Richard Sloan   Dieter E. Pongratz   Gian Domenico Borasio     27
Decision making   Wendy Johnston     43
Advance directives   Gian Domenico Borasio   Raymond Voltz     55
Control of symptoms: dyspnoea and respiratory symptoms   Rebecca Lyall   Deborah Gelinas     63
Control of symptoms: dysphagia   Edith Wagner-Sonntag   Mario Prosiegel     95
Control of symptoms: cognitive dysfunction   Laura Goldstein     111
Control of symptoms: other symptoms (including depression)   Gian Domenico Borasio   David Oliver     129
Psychosocial care   Donal Gallagher   Barbara Monroe     143
Spiritual care   Robert Lambert     169
Multidisciplinary care: physiotherapy   Ulrike Hammerbeck   Alison Garrett     187
Multidisciplinary care: occupational therapy   Chris Kingsnorth     203
Multidisciplinary care: speech and language therapy   Amanda Scott   Maryanne McPhee     213
Multidisciplinary care: psychology   Jos Kerkvliet     229
Multidisciplinary care: nursing care   Dallas Forshew     243
International aspects of care   David Oliver     255
End of life care: ethical issues   Leo McCluskey   Lauren Elman     265
End of life care   Nigel Sykes     287
Bereavement   Ann McMurray   Amanda Harris     301
Personal experiences: one day at a time: the experience of an ALS caregiver   Linda Centers     325
Personal experiences: amyotrophic lateral sclerosis and how it affects my life   Phil Hankins     333
Suppliers     337
Websites     339
Index     341
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