Hope in palliative care: from narcissism to self-transcendence in amyotrophic lateral sclerosis.
BACKGROUND
The concept of hope in palliative care is an important and neglected area of research. Amyotrophic lateral sclerosis (ALS), a progressive degenerative motor neuron disease, offers an excellent opportunity to study this construct as the illness is virtually always fatal. Our research explored the meaning of hope in individuals with ALS.


METHODS
Sixteen patients (13 males and 3 females; mean age, 54) were interviewed during routine clinic visits to the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center, San Francisco. The Forced Vital Capacity (FVC) Scale and the ALS Functional Rating Scale-Revised (ALSFRS-R) and a Hope Scale were administered. Themes of hope were identified and categorized.


RESULTS
Hope categories included: (1) hope for a cure, (2) social support, (3) search for information, (4) spiritual beliefs, (5) limiting the impact, (6) adapting to changing capacities, (7) living in the moment, and (8) self-transcendence. The relationship between hope and the FVC value and individual as well as overall ALSFRS-R ratings were examined, and none were significant.


CONCLUSIONS
Individuals varied in their capacity to cope with their illness unrelated to their physical ability. Themes ranged from a primary focus on the self to one of heightened concern for others, on continuum from narcissism to altruism. Respondents cited using a number of categories of hope (mean=5).


CONCLUSIONS
Patients draw upon a variety of mechanisms to sustain hope when facing chronic disease, including hope for a cure, support from others, seeking information, spiritual beliefs, limiting the impact, adapting to changing capacities, living in the moment, and transcending the self. The palliative care team can play an important role by promoting discussions regarding hopefulness and its many forms in individuals with ALS.
Fanos
Joanna H
JH
Department of Pediatrics, Dartmouth Medical School, Dartmouth-Hitchcock Medical Center Lebanon, New Hampshire 03756, USA. Joanna.Fanos@Dartmouth.edu
Gelinas
Deborah F
DF
Foster
Reed S
RS
Postone
Norman
N
Miller
Robert G
RG
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology* / Q000628:therapy; D001290:Attitude; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009013:Morale; D010166:Palliative Care / Q000523:psychology*; D012495:San Francisco; D012944:Social Support; D029181:Spirituality