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
), a peer-reviewed publication of
Mary Ann Liebert, Inc (http://www.liebertpub.com/
). The paper is available free
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.
----------------------------Article adapted by Medical News Today
from original press release.
Journal of Palliative Medicine
)), 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,
), 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
Mary Ann Liebert, Inc.140 Huguenot St., New Rochelle, NY 10801
Source: Vicki Cohn Mary Ann Liebert,
Inc./Genetic Engineering News