Beyond Denial and Despair: ALS and Our Heroic Potential for Hope

Abstract

Because the patient with amyotrophic lateral sclerosis (ALS) knows at the outset that he or she is facing an incurable and always fatal illness, the experience of hope may be different in the ALS community from that in the general palliative care community. Although the word “hope” is frequently and passionately used by both patients and professionals in the ALS community, to date there has been little published on the subject. Hopelessness and despair are a very real part of the ALS experience. But true hope, of a kind more powerful than mere physical survival, can also be part of the ALS journey. What is this “hope” the professional is expected to engender and the patient is encouraged not to lose? How can professionals help the ALS patient find hope and meaning? This article is an exploration of hope by someone who has experienced ALS, first as an occupational therapist, then as the daughter and caregiver of an ALS patient. Based on literature review and personal experience, factors leading to both hope and hopelessness are explored. Finally, the author offers several strategies that palliative care professionals can use to help ALS patients find hope.