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