Engaging Specialist Palliative Care in the Management of Amyotrophic Lateral Sclerosis: A Patient-, Family-, and Provider-Based Approach

J Palliat Care. 2022 Apr;37(2):170-176. doi: 10.1177/0825859719895827. Epub 2020 Feb 17.


Objective: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

Keywords: amyotrophic lateral sclerosis; integration; palliative care; qualitative research; serious illness care.

MeSH terms

  • Amyotrophic Lateral Sclerosis* / therapy
  • Caregivers
  • Health Personnel
  • Hospice and Palliative Care Nursing*
  • Humans
  • Palliative Care / methods
  • Qualitative Research