Amyotrophic lateral sclerosis and palliative care: where we are, and the road ahead
Abstract
Patients with amyotrophic lateral sclerosis (ALS) have high symptom burdens, including pain, fatigue, dyspnea, and sialorrhea, and they must make difficult decisions about the use of life‐prolonging therapies, such as long‐term mechanical ventilation. The impact of ALS is also felt by family caregivers who often struggle to meet the heavy physical, financial, and emotional demands associated with the illness. Expert multidisciplinary care may improve both quality and length of life of patients with ALS. However, although advances have been made in the treatment of some symptoms, others, including pain management, remain poorly studied. Involvement of palliative care specialists as part of the ALS multidisciplinary team is recommended, as we continue to work toward improving the quality of life for patients and their families. Muscle Nerve, 2012
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Patients with MND face physical and psychological challenges, including high symptom burden (fatigue, dyspnoea, pain), loss of independence, and inability to communicate.
“Patients with MND face physical and psychological challenges, including high symptom burden (for instance fatigue, dyspnoea, and pain) as well as the loss of independence and the inability to communicate”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Blackhall, 2012
A lack of meaning in life, a central element of mental well-being, has been identified as a predictor of hopelessness for patients with MND.
“A lack of meaning in life, a central element of mental well-being, has been identified as a predictor of hopelessness for patients with MND”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Blackhall, 2012
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 [7]
Patients with MND highly value maximizing the autonomy of their actions and task functions and require that they are respected within interactions.
“Patients highly valued maximizing the autonomy of their actions and task functions and required that they were respected within interactions (5, 7, 8, 11, 12, 14, 15, 16, 18, 19, 20, 21, 23, 24, 25, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Patients with MND consistently highlight the need for choice and autonomy during interactions.
“Related to this, patients consistently highlighted the need for choice and autonomy given during an interaction (5, 6, 7, 9, 12, 14, 15, 20, 24, 25, 26, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Patients with MND identify having control over end-of-life decisions as important.
“Finally, having control over the end of life decisions was also identified (7, 12, 14, 20, 27, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Some patients with MND identify the need for endurance of their situation and resilience against it, combined with a determination to continue to live.
“Others identified the need for patient endurance of their situation and having resilience against it, combined with a determination to continue to live (2, 4, 7, 13, 14).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Patients with MND describe the need to retain dignity and feel respected during interactions.
“Patients described the need to retain dignity and feel respected during interactions (5, 7, 12, 13, 15, 23, 25).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
The continued expression of strong emotions or feelings, like anger, love through closeness and sexual intimacy, is identified as important for patients with MND.
“The continued expression of strong emotions or feelings, like anger, love through closeness and sexual intimacy was identified as important (1, 7, 13, 16, 20).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Patients with MND use the strategy of dealing with problems as they arrive and affect their life.
“(b) Dealing with problems as they arrive and affect their life (2, 7, 10, 11, 12, 14, 18, 25, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Functional aids are valued by patients with MND, most frequently systems that aid communication such as an alternative and augmentative communication device.
“Functional aids were valued by patients (3, 7, 9, 11, 12, 16, 17, 18, 20, 21, 22), this most frequently included systems which aid communication such as an alternative and augmentative communication device.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
Patients with MND continued meaningful activities or continued being "normal", which provided access to a sense of purpose and meaning as well as valued interactions.
“Other pragmatic adaptation included individuals continuing meaningful activities (4, 5, 7, 9, 10, 12, 14, 15, 16, 17, 18, 19, 20, 25, 27, 29) or continuing being “normal” (1, 2, 5, 7, 9, 17, 18, 24) which provided access to a sense of purpose and meaning as well as valued interactions.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [7]
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 [7]
The continued experience of loss and the rapid decline in physical and functional health may explain why individuals with motor neuron disease can feel hopeless and experience a loss of meaning in life as psychological consequences of MND.
“The continued experience of loss and the rapid decline in individuals physical and functional health may explain why individuals can feel hopeless and experience a loss of meaning in life as psychological consequences of MND (Blackhall, 2012).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Blackhall, 2012
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Nontraumatic Spinal Cord Injuries
Ko, H.-Y. (2019) · Springer eBooks · doi:10.1007/978-981-10-7033-4_12
Larson, A. R., Chen, J., Holman, A. S., Sullivan, S. L., Williams, P., Nicholson, K. A., Lin, D. T., Kiyota, Y., & Richmon, J. D. (2021) · Cancer Reports · doi:10.1002/cnr2.1518
Nontraumatic Spinal Cord Injuries/Lesions
Ko, H.-Y. (2022) · Springer eBooks · doi:10.1007/978-981-19-0228-4_16
Liévano, J. C. G. (2020) · doi:10.11144/javeriana.10554.34860
Understanding Nontraumatic Spinal Cord Disorders
Ko, H.-Y. (2023) · Springer eBooks · doi:10.1007/978-981-99-4542-9_16
Respiratory Care of the ALS Patient
Berlinger, M. S., & Lechtzin, N. (2024) · Respiratory medicine · doi:10.1007/978-3-031-65335-3_10
Christie, M. J., & Sharrief, A. Z. (2024) · Springer eBooks · doi:10.1007/978-3-031-68786-0_6
Michelon, H., Lefèvre-Dognin, C., Paquereau, J., Guidoni, R., Boudy, V., Ruiz, F., & Vallet, T. (2026) · Pharmacology Research & Perspectives · doi:10.1002/prp2.70250
- Authors
- Blackhall, L. J.
- Affiliations
- University of Virginia (US)
- Corresponding author
- Blackhall, Leslie J.
- ORCID
- Blackhall, Leslie J.
- Venue
- Muscle & Nerve
- Publisher
- Wiley
- Published
- 2012-02-13
- Volume
- 45
- Issue
- 3
- Pages
- 311-318
- ISSN
- 0148-639X (ISSN-L)
- 1097-4598
- OpenAlex
- W2022247498
- Cited by
- 88
- References
- 103
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 6 · 2023: 5 · 2022: 1 · 2021: 7 · 2020: 8 · 2019: 7 · 2018: 10 · 2017: 5 · 2016: 4 · 2015: 12 · 2014: 4 · 2013: 8 · 2012: 6
- FWCI
- 0.71
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Muscle & Nerve (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- 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, palliative care, symptom burden, pain management, fatigue, dyspnea, drooling, mechanical ventilation, family caregivers, multidisciplinary care, quality of life, end-of-life decisions
- MeSH terms
- Amyotrophic Lateral Sclerosis, Decision Making, Dyspnea, Humans, Palliative Care, Respiratory Insufficiency, Sialorrhea, Mood Disorders, Pain Management
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