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Hope among patients with ALS may take a variety of forms
March 28, 2008Sustaining 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.
Mary Ann Liebert, Inc./Genetic Engineering News
"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.
Mary Ann Liebert, Inc./Genetic Engineering News
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