Hope among patients with ALS may take a variety of forms

March 27, 2008

New Rochelle, NY, March 27, 2008 -Sustaining hope in the face of a chronic, debilitating illness such as amyotrophic lateral sclerosis (ALS) should be a goal of palliative care and can take many forms, representing a continuum from focusing on the self to concern for others, as described in a paper published in the April issue (Volume 8, Number 3) of Journal of Palliative Medicine (www.liebertpub.com/jpm), a peer-reviewed publication of Mary Ann Liebert, Inc (www.liebertpub.com). The paper is available free online.

The concept of hope can be affected by a variety of internal and external factors, and can impact an individual's psychological and physical health. Based on interviews with 16 individuals with ALS, Joanna H. Fanos, from the Department of Pediatrics, Dartmouth Medical School (Lebanon, NH), Deborah F. Gelinas, from the Department of Neurology, Nashoba Valley Medical Center (Ayer, MA), Reed S. Foster, from the Department of Psychological & Brain Sciences, Dartmouth College (Hanover, NH), and Norman Postone and Robert Gordon Miller, from California Pacific Medical Center (San Francisco, CA), explored the concept of hope in chronic disease and how palliative care providers can help initiate discussions aimed at promoting hopefulness.

The patients with ALS, a progressive degenerative motor neuron disease that is almost always fatal demonstrated a range of coping capabilities unrelated to the extent of their physical disability. Several themes of hope emerged, along a continuum from narcissism to altruism: hope for a cure; social support; search for information; spiritual beliefs; limiting the impact; adapting to changing capacities; living in the moment; and self-transcendence.

"ALS is a terminal illness from the day of diagnosis; what role can and should hope have in providing palliative care for these patients" Too many health professionals think that promoting hopefulness can only be achieved by withholding the truth. Asking the patients themselves what hopefulness means to them leads to a more nuanced definition," says Charles F. von Gunten, MD, PhD, Editor-in-Chief of the journal.
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Journal of Palliative Medicine ( www.liebertpub.com/jpm ), publishing 10 issues annually in print and online, is an interdisciplinary journal that reports on the clinical, educational, legal, and ethical aspects of care for seriously ill and dying patients. It includes coverage of the latest developments in drug and non-drug treatments for patients with life-threatening diseases including cancer, AIDS, cardiac disease, pulmonary, neurologic, respiratory conditions, and other diseases. The Journal reports on the development of palliative care programs around the United States and the world, and on innovation in palliative care education. Journal of Palliative Medicine is the Official Journal the American Academy of Hospice and Palliative Medicine.

Mary Ann Liebert, Inc. (www.liebertpub.com), is a privately held, fully integrated media company known for establishing authoritative peer-reviewed journals in many promising areas of science and biomedical research, including AIDS Patient Care and STDs, Disease Management, and The Journal of Alternative and Complementary Medicine. Its biotechnology trade magazine, Genetic Engineering & Biotechnology News (GEN), was the first in its field and is today the industry's most widely read publication worldwide. A complete list of the firm's 60 journals, newsmagazines, and books is available online.

Mary Ann Liebert, Inc.140 Huguenot St., New Rochelle, NY 10801
www.liebertpub.com
Phone (914) 740-2100(800) M-LIEBERT Fax (914) 740-2101

Mary Ann Liebert, Inc./Genetic Engineering News

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