Palliative Care in Amyotrophic Lateral Sclerosis From Diagnosis to Bereavement

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.

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".

1. Amyotrophic lateral sclerosis/motor neuron disease, Chris Shaw, Annika Quinn and Emma Scotter
2. Palliative care, David Oliver
3. Communication: Breaking the news, Richard Sloan, Pongratz and Gian Domenico Borasio
4. Decision making, Wendy Johnston
5. Advance directives, Gian Domenico Borasio and Raymond Voltz
6. Control of symptoms: Dyspnoea, Deborah Gelinas
7. Control of symptoms: Dysphagia, Edith Wagner-Sonntag
8. Control of symptoms: Cognitive dysfunction, Laura H. Goldstein
9. Pain, psychological distress and other symptoms, David Oliver, Gian Domenico Borasio, and Wendy Johnston
10. Psychosocial care, Sue Smith and Maria Wasner
11. Spiritual care, Robert Lambert
12. Multidisciplinary care: Physiotherapy, Ulrike Hammerbeck and Emily Jay
13. Multidisciplinary care: Occupational therapy, Chris Kingsnorth and Sarah Lavender
14. Interdisciplinary care: Speech and language therapy, Amanda Scott and Maryanne McPhee
15. Multidisciplinary care: Nursing care, Dallas Forshew
16. Complementary and alternative medicine, Gregory T. Carter, Sunil Kumar Aggarwa, Weiss, and Richard S. Bedlack
17. Ethical issues, Leo McCluskey, Laura Elman, and Wendy Johnston
18. End of Life Care in Motor Neurone Disease, Nigel Sykes
19. Bereavement, Joy Kelly
20. No time to waste: a family's journey from diagnosis to bereavement, Marika Warren, Michelle Warren, and Douglas Warren
Appendix: List of useful websites for ALS patients