Some difficult decisions in ALS/MND
- 16 June 2010
- journal article
- review article
- Published by Taylor & Francis Ltd in Amyotrophic Lateral Sclerosis
- Vol. 11 (4), 339-343
- https://doi.org/10.3109/17482968.2010.487532
Abstract
The physical and emotional damage caused by ALS creates ripples that reach a wide group of individuals beyond the patient. Decisions about care and end of life are never straightforward; solutions are always bespoke and must involve the wider multidisciplinary team. There is a need for awareness of how these discussions will be affected by personal attitudes, experience, culture and issues in our own professional and personal lives. The aim should be to respond to patient and family and be honest, sensitive, empathic, understandable and direct, with a constant balance of hope with realism. Finally, as professionals we have our own need for support and to be aware of our own feelings to prevent the very real threat of compassion fatigue (20). A strong multidisciplinary team is greater than the sum of its parts, and can provide robust internal support to its members, using their pooled expertise to serve patients and their families more effectively as a result. © 2010 Informa UK LtdKeywords
This publication has 15 references indexed in Scilit:
- Compassion Fatigue: What Is It? Why Does It Matter? Recognizing the Symptoms, Acknowledging the Impact, Developing the Tools to Prevent Compassion Fatigue, and Strengthen the Professional Already Suffering From the EffectsAmerican Journal of Hospice and Palliative Medicine®, 2010
- Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review)Neurology, 2009
- Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosisAmyotrophic Lateral Sclerosis, 2009
- Preference for place of care and place of death in palliative care: are these different questions?Palliative Medicine, 2008
- Management of respiration in MND/ALS patients: An evidence based reviewAmyotrophic Lateral Sclerosis, 2006
- Nutritional management in MND/ALS patients: an evidence based reviewAmyotrophic Lateral Sclerosis, 2004
- Euthanasia and Physician-Assisted Suicide among Patients with Amyotrophic Lateral Sclerosis in the NetherlandsThe New England Journal of Medicine, 2002
- Practice parameter: The care of the patient with amyotrophic lateral sclerosis (an evidence-based review) [RETIRED]Neurology, 1999
- Attitudes of Patients with Amyotrophic Lateral Sclerosis and Their Care Givers toward Assisted SuicideThe New England Journal of Medicine, 1998
- The quality of care and symptom control — the effects on the terminal phase of ALS/MNDJournal of the Neurological Sciences, 1996