Palliative Care in Amyotrophic Lateral Sclerosis (motor Neurone Disease)David Oliver, Gian Domenico Borasio, Declan Walsh Although new treatments for amyotrophic lateral sclerosis/motor neurone disease are being developed, these at present offer only the potential to slow the disease process. Therefore a palliative care approach to the care of the patient and their family is at the center of good clinical practice in ALS/MND. This book aims to provide and evidence based guide to the care of people with ALS/MND, including the control of symptoms, the psychosocial care of patients and their families and care in bereavement. The palliative care approach to the care of ALS/MND is outlined and the role of the multidisciplinary team emphasized. The international authorship are from many different disciplines and are all closely involved in the care of ALS patients; giving a depth of practical knowledge and experience and allowing a comparison of the differences across cultures, social circumstances, health care systmes and nations. All contributors are clinicians involved in the care of people with ALS/MND and they are able to provide clear guidelines of the care throughout the disease process, from telling of the diagnosis to death. The experience of patients and families are considered and case studies are provided to show the practical applications of the theoretical knowledge. An evidence based approach, grounded in day to day care of patients, is used. Different models of care are explored and the interaction of palliative care with other treatment regimes is addressed, as the experience from the treatment of cancer has shown that there may easily be areas of conflict and confusion if there is a lack of clarity in the care provided for patients. The book aims to provide a reference for all involved in the care of patients with ALS/MND, including neurologists, general physicians, rehabilitationists, paramedical staff, general/family practitioners and specialist palliative care teams. The care of a patient with ALS/MND, and their family, is often a challenge, but one all should take up so that patients can live life as fully as possible. |
Contents
Palliative care | 21 |
Breaking the news | 29 |
The control of symptoms | 43 |
Copyright | |
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ability advance directives ALS/MND amyotrophic lateral sclerosis appropriate assessment bereavement Borasio breathlessness British Medical Journal bulbar cancer caregivers cause cent clinical communication coping cough death deterioration diagnosis difficult disability discussion disease progression distress drugs dysphagia dyspnoea effect emotional euthanasia experience feelings function gastrostomy glutamate glutamate transporter grief healthcare hospice hypoventilation illness impairment important increasing individual intervention involved Journal of Neurology Leigh loss lower motor neurone mechanical ventilation Mitsumoto MND Association motor neurone disease muscle weakness neurofilament Neurological Sciences Neurology NIPPV nursing opioids Oppenheimer options pain palliative care Palliative Medicine patient and family patients and carers patients with amyotrophic person physical physician Physiotherapy problems professionals psychological psychosocial rehabilitation respiratory failure respiratory muscle riluzole role sleep social SOD1 specialist palliative speech spinal stage survival swallowing symptom control terminal phase therapy tracheostomy treatment Voltz wheelchair