Promoting excellence in end‐of‐life care in ALS
- 1 January 2005
- journal article
- research article
- Published by Taylor & Francis in Amyotrophic Lateral Sclerosis
- Vol. 6 (3) , 145-154
- https://doi.org/10.1080/14660820510028647
Abstract
The type and quality of end‐of‐life care varies greatly in ALS; the time to initiate end‐of‐life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end‐of‐life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end‐of‐life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end‐of‐life care specifically in ALS.Keywords
This publication has 38 references indexed in Scilit:
- The final month of life in patients with ALSNeurology, 2002
- Palliative care in amyotrophic lateral sclerosisNeurologic Clinics, 2001
- Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosisJournal of the Neurological Sciences, 2001
- Amyotrophic lateral sclerosis care in Italy: a nationwide study in neurological centersJournal of the Neurological Sciences, 2001
- Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European surveyAmyotrophic Lateral Sclerosis, 2001
- Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and CaregiversPsychosomatic Medicine, 2000
- Improving the quality of life for people with ALS: the challenge ahead.Amyotrophic Lateral Sclerosis, 2000
- Prospective study of palliative care in ALS: choice, timing, outcomesJournal of the Neurological Sciences, 1999
- End-of-life careNeurology, 1999
- Practice parameter: The care of the patient with amyotrophic lateral sclerosis (an evidence-based review) [RETIRED]Neurology, 1999