Promoting excellence in end-of-life care in ALS Journal Article


Authors: Mitsumoto, H.; Bromberg, M.; Johnston, W.; Tandan, R.; Byock, I.; Lyon, M.; Miller, R. G.; Appel, S. H.; Benditt, J.; Bernat, J. L.; Borasio, G. D.; Carver, A. C.; Clawson, L.; Del Bene, M. L.; Kasarskis, E. J.; Legrand, S. B.; Mandler, R.; McCarthy, J.; Munsat, T.; Newman, D.; Sufit, R. L.; Versenyi, A.
Article Title: Promoting excellence in end-of-life care in ALS
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. © 2005 Taylor & Francis.
Keywords: review; palliative care; medical decision making; quality of life; palliative therapy; health care policy; health care quality; financial management; health care cost; patient care; systematic review; bereavement; psychosocial care; interdisciplinary communication; health services research; information dissemination; consensus development; caregiver; terminal care; awareness; medical care; religion; spirituality; health care delivery; hospice; quality of health care; health care access; attitude to death; health education; end of life; als; amyotrophic lateral sclerosis; motor neuron disease; advance care planning
Journal Title: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
Volume: 6
Issue: 3
ISSN: 1466-0822
Publisher: Taylor & Francis Group  
Date Published: 2005-09-01
Start Page: 145
End Page: 154
Language: English
DOI: 10.1080/14660820510028647
PUBMED: 16183556
PROVIDER: scopus
DOI/URL:
Notes: --- - "Cited By (since 1996): 21" - "Export Date: 24 October 2012" - "CODEN: ALSCF" - "Source: Scopus"
Altmetric
Citation Impact
MSK Authors
  1. Alan C Carver
    24 Carver