Intentions to work during terminal illness: an exploratory study of antecedent conditions.

Facing a terminal illness is an unimaginably difficult experience, yet many individuals intend to work despite their prognosis. However, research has not systematically examined the potential antecedents underlying such intentions. Using behavioral intention theory as an underlying framework, this study hypothesized that reasons for working (intrinsic and extrinsic), the will to live, disability severity, accessibility of travel, and age would predict intentions to work during terminal illness. A representative sample of medically diagnosed amyotrophic lateral sclerosis (a.k.a. Lou Gehrig's disease) patients with a mean life expectancy of approximately 3 years participated (mean age=57.8 years). Controlling for length of diagnosis, employment status, and demographic variables, results indicated that intrinsic reasons were particularly strong predictors of intentions, followed by age, disability severity, and accessibility of travel. Exploratory findings also indicated that behavioral intentions were positively related to future employment status, consistent with past theory. ((c) 2005 APA, all rights reserved).

Promoting excellence in end-of-life care in ALS.

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.