Promoting excellence in end-of-life care in ALS

Hiroshi Mitsumoto*, Mark Bromberg, Wendy Johnston, Rup Tandan, Ira Byock, Mary Lyon, Robert G. Miller, Stanley H. Appel, Josh Benditt, James L. Bernat, Gian Domenico Borasio, Alan C. Carver, Lora Clawson, Maura L. Del Bene, Edward J. Kasarskis, Susan B. Legrand, Raul Mandler, Jane McCarthy, Theodore Munsat, Daniel NewmanRobert L. Sufit, Andrea Versenyi

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

62 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)145-154
Number of pages10
JournalAmyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
Volume6
Issue number3
DOIs
StatePublished - Sep 1 2005

Keywords

  • ALS
  • Amyotrophic lateral sclerosis
  • End of life
  • Motor neuron disease
  • Palliative care

ASJC Scopus subject areas

  • Clinical Neurology

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