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.
authors.affiliation: The Elenor & Lou Gehrig MDA/ALS Research Center, Columbia University Neurological Institute, New York, NY 10032, USA. hm264@columbia.edu
authors.forename: Hiroshi
authors.initials: H
authors.lastname: Mitsumoto
authors.forename: Mark
authors.initials: M
authors.lastname: Bromberg
authors.forename: Wendy
authors.initials: W
authors.lastname: Johnston
authors.forename: Rup
authors.initials: R
authors.lastname: Tandan
authors.forename: Ira
authors.initials: I
authors.lastname: Byock
authors.forename: Mary
authors.initials: M
authors.lastname: Lyon
authors.forename: Robert G
authors.initials: RG
authors.lastname: Miller
authors.forename: Stanley H
authors.initials: SH
authors.lastname: Appel
authors.forename: Josh
authors.initials: J
authors.lastname: Benditt
authors.forename: James L
authors.initials: JL
authors.lastname: Bernat
authors.forename: Gian Domenico
authors.initials: GD
authors.lastname: Borasio
authors.forename: Alan C
authors.initials: AC
authors.lastname: Carver
authors.forename: Lora
authors.initials: L
authors.lastname: Clawson
authors.forename: Maura L
authors.initials: ML
authors.lastname: Del Bene
authors.forename: Edward J
authors.initials: EJ
authors.lastname: Kasarskis
authors.forename: Susan B
authors.initials: SB
authors.lastname: LeGrand
authors.forename: Raul
authors.initials: R
authors.lastname: Mandler
authors.forename: Jane
authors.initials: J
authors.lastname: McCarthy
authors.forename: Theodore
authors.initials: T
authors.lastname: Munsat
authors.forename: Daniel
authors.initials: D
authors.lastname: Newman
authors.forename: Robert L
authors.initials: RL
authors.lastname: Sufit
authors.forename: Andrea
authors.initials: A
authors.lastname: Versenyi
mesh_terms: D032722:Advance Care Planning; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology*; D001293:Attitude to Death; D006302:Health Services Research; D006801:Humans; D011787:Quality of Health Care; D011788:Quality of Life; D029181:Spirituality; D013727:Terminal Care / Q000523:psychology*