Hope in palliative care: from narcissism to self-transcendence in amyotrophic lateral sclerosis.
Joanna H Fanos, Deborah F Gelinas, Reed S Foster, Norman Postone, Robert G Miller
Journal of Palliative Medicine April 1, 2008 DOI: 10.1089/jpm.2007.0098 (opens in new tab)
Study at a glance
AI-extracted from the abstract| Characteristics | Qualitative interview study Peer reviewed |
|---|---|
| Sample size | 16 |
| Population | Individuals with amyotrophic lateral sclerosis (ALS) attending routine clinic visits at the Forbes Norris MDA/ALS Research Center, California Pacific Medical Center, San Francisco; 13 males and 3 females, mean age 54 |
| Measures | Forced Vital Capacity (FVC) Scale, ALS Functional Rating Scale-Revised (ALSFRS-R), Hope Scale |
| Topics | End-of-life distress |
| Keywords | Humans Amyotrophic lateral sclerosis Palliative care Adaptation, psychological Attitude Morale Spirituality Social support Adult Middle aged San francisco Female Interviews as topic |
| Key findings | Participants described hope in eight categories, including hope for a cure, social support, information seeking, spiritual beliefs, limiting the impact, adapting to changing capacities, living in the moment, and self-transcendence, using an average of five categories each. Hope was not significantly related to forced vital capacity or ALS Functional Rating Scale-Revised ratings. The authors argue that individuals' capacity to cope varied independently of their physical ability, ranging along a continuum they describe from narcissism to altruism. |
Abstract
Introduction: 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. Patients and
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.
Discussion: 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).
Conclusion: 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.
Comparable studies
Other qualitative studies on end-of-life distress, most cited first.