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.
|Number of pages||10|
|Journal||Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders|
|State||Published - Sep 2005|
Bibliographical noteFunding Information:
The Workgroup gratefully acknowledges grant support from The RWJ Foundation and The ALS Association, and administrative support from Julie Emnett of The RWJ Foundation, and the ALS Association. Lisa Bardach, CCC-SLP, participated in discussions and compilation of the communication issues section, and Starr H. Pearlman participated in the preparation of the manuscript.
- Amyotrophic lateral sclerosis
- End of life
- Motor neuron disease
- Palliative care
ASJC Scopus subject areas
- Clinical Neurology