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.
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Other studies document the value of humor for patients with MND, including black humor or teasing.
“Other studies documented the value of humor for patients (4, 11, 16, 18, 20, 29), this included black humor or teasing.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Individuals with MND can feel fear and anxiety about their future deterioration, as well as being afraid of death.
“Individuals could feel fear and anxiety about their future deterioration, as well as being afraid of death (2, 10, 11, 12, 13, 14, 15, 21, 23, 25, 26, 27, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Patients with MND can feel frustration at the effects of the illness.
“This included being frustrated (2, 8, 11, 12, 15, 21, 25) at the effects of the illness.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Patients with MND identify the need to fight against the illness and not give into it.
“Patients identified the need to fight against the illness and not give into it (7, 11, 19).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Relationships and interaction with others are identified as important for patients with MND.
“Further to this and more generally, relationships and interaction with others was identified as important (3, 5, 11, 14, 16, 18, 19, 20, 25, 27, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
A number of studies highlighted that patients with MND require physical assistance in increasing quantities.
“A number of studies highlighted that patients required physical assistance in increasing quantities (5, 11, 16, 18).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
A number of patients with MND highlight the need for different support services that provide tangible assistance to care.
“A number of patients highlighted the need for different support services which provided tangible assistance to care (3, 11, 14, 16, 17, 21, 25, 26).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
The cost of care can restrict care provision for patients with MND.
“The cost of care could restrict care provision (3, 10, 11, 20).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Patients with MND used alternative therapies, adapted health behaviors including rehabilitative exercises, considering care routines, or undertaking hobbies or activities, and made dietary adaptations.
“This included, using alternative therapies (2, 11, 16), adapting health behaviors including rehabilitative exercises, considering care routines, or undertaking hobbies or activities (5, 11, 16) and making dietary adaption (2, 9, 16).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Reassurance and trust from health care professionals are particularly important for end-of-life care for patients with MND.
“This was particularly important for end of life care (6, 11, 14, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Patients with MND use the strategy of planning activities and interactions to engage in.
“(d) Planning activities and interactions to engage in (4, 8, 11, 12, 14, 20, 27).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Patients with MND often suggested that the best they could do was to live positively and make the most of the time they had left.
“Patients often suggested that the best they could do was to live positively and make the most of the time they had left (2, 10, 11, 14, 15, 18, 20, 27, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Some patients with MND wanted a distraction or a break from the illness.
“Other individuals wanted a distraction or a break from the illness (7, 10, 11, 14, 17).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [11]
Focusing on life in the present moment rather than the future is valuable.
“There is evidence of the value of such processes, such as focusing on life in the present moment rather than the future (Centers, 2001).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Centers, 2001
Denial can be considered problematic if it is continuously used as a strategy.
“Although, it can be considered problematic if it is continuously used as a strategy (Centers, 2001),”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Centers, 2001
Hope for patients with motor neuron disease is not associated purely with an individual's survival.
“If hope was associated purely with an individual's survival then the experience of hopelessness would be the natural outcome, however, literature considering patients with MND suggests this is not the case.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Centers, 2001
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- Authors
- Centers, L. C.
- Affiliations
- ALSA Kentucky Chapter, Lexington, Kentucky, USA
- Corresponding author
- Centers, Linda C.
- Venue
- Journal of Palliative Care
- Publisher
- SAGE Publications
- Published
- 2001-12
- Volume
- 17
- Issue
- 4
- Pages
- 259-264
- ISSN
- 0825-8597 (ISSN-L)
- 2369-5293
- OpenAlex
- W171574444
- Cited by
- 26
- References
- 12
- Citations by year
- 2024: 1 · 2021: 1 · 2020: 1 · 2019: 2 · 2018: 1 · 2015: 1 · 2012: 1
- FWCI
- 1.21
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Palliative Care (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Psychology › Applied Psychology › Optimism, Hope, and Well-being
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- amyotrophic lateral sclerosis, hope, hopelessness, despair, palliative care, patient experience, caregiver experiences, meaning in life, occupational therapy, end-of-life care, coping strategies
- MeSH terms
- Adaptation, Psychological, Amyotrophic Lateral Sclerosis, Family, Humans, Morale, Palliative Care, Professional-Patient Relations, Social Support
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