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El. knyga: Palliative Care in Amyotrophic Lateral Sclerosis: From Diagnosis to Bereavement 3rd Revised edition [Oxford Scholarship Online E-books]

Edited by (Consultant Physician in Palliative Medicine, Wisdom Hospice, Rochester, and Honorary Reader, University of Kent, UK), Edited by , Edited by (Professor and Chair in Palliative Medicine, University of Lausanne, Centre Hospitalier Universitaire Vaudois, Switze)
  • Formatas: 338 pages
  • Išleidimo metai: 20-Mar-2014
  • Leidėjas: Oxford University Press
  • ISBN-13: 9780199686025
  • Oxford Scholarship Online E-books
  • Kaina nežinoma
  • Formatas: 338 pages
  • Išleidimo metai: 20-Mar-2014
  • Leidėjas: Oxford University Press
  • ISBN-13: 9780199686025
Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: 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. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement.

Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.
List of abbreviations
vii
List of contributors
ix
1 Amyotrophic lateral sclerosis/motor neuron disease
1(20)
Christopher E. Shaw
Annika Quinn
Emma Daniel
2 Palliative care
21(12)
David Oliver
3 Communication: breaking the news
33(16)
Richard Sloan
Gian Domenico Borasio
4 Decision-making
49(10)
Wendy Johnston
5 Advance directives
59(6)
Gian Domenico Borasio
Raymond Voltz
6 Respiratory complications
65(26)
Deborah Gelinas
7 Control of symptoms: dysphagia
91(16)
Edith Wagner-Sonntag
8 Control of symptoms: cognitive dysfunction
107(20)
Laura H. Goldstein
9 Pain, psychological distress, and other symptoms
127(18)
David Oliver
Gian Domenico Borasio
Wendy Johnston
10 Psychosocial care
145(26)
Sue Smith
Maria Wasner
11 Spiritual care
171(16)
Robert Lambert
12 Multidisciplinary care: physiotherapy
187(16)
Ulrike Hammerbeck
Emily Jay
13 Multidisciplinary care: occupational therapy
203(12)
Chris Kingsnorth
Sarah Lavender
14 Multidisciplinary care: speech and language therapy
215(18)
Amanda Scott
Maryanne McPhee
15 Multidisciplinary care: nursing care
233(12)
Dallas A. Forshew
16 Complementary and alternative medicine
245(12)
Gregory T. Carter
Sunil Kumar Aggarwal
Michael Weiss
Richard S. Bedlack
17 End-of-life care: ethical issues
257(20)
Leo McCluskey
Lauren Elman
Wendy Johnston
18 End-of-life care in ALS
277(16)
Nigel Sykes
19 Bereavement
293(14)
Joy Kelly
20 No time to waste: a family's journey from diagnosis to bereavement
307(8)
Marika Warren
Michelle Warren
Douglas Warren
Appendix: List of useful websites for ALS patients 315(2)
Index 317
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 ".