Palliative Care in Neurology: Integrating a Palliative Approach to Amyotrophic Lateral Sclerosis Care

• Main Authors: Anne Hogden, Samar M. Aoun, Peter L. Silbert
• Format: Article
• Language: English
• Published: European Medical Journal 2018-08-01
• Series: European Medical Journal Neurology
• Subjects: Integrated care; interdisciplinary care; multidisciplinary team; neurodegenerative conditions; palliative approach.
• Online Access: https://www.emjreviews.com/neurology/article/palliative-care-in-neurology-integrating-a-palliative-approach-to-amyotrophic-lateral-sclerosis-care/

This narrative review examines connections between neurology, specialist palliative care, and an integrated palliative approach to care for people living with neurodegenerative conditions. To illustrate the complexities of including palliative care in the management of neurodegenerative conditions, amyotrophic lateral sclerosis (ALS) is used as a case study. Challenges to co-ordinated ALS care and smooth care transitions between multiple services and healthcare professionals are discussed, including the timing of palliative care delivery in ALS; the education and training needs of healthcare professionals; and misperceptions of palliative care held by healthcare professionals, patients, and families. The benefits of adopting an integrated palliative approach to care for patients, families, and healthcare professionals are clarified. To enhance this, a family perspective is given on experiences of ALS neurology and palliative services, the challenges they faced, and aspects of care that facilitated the patient’s preferences for the time they had left. This review concludes that a palliative approach integrated into the care plan of people with ALS from the time of diagnosis can optimise quality of life by relieving symptoms; providing emotional, psychological, and spiritual support pre-bereavement; minimising barriers to a comfortable end of life; and supporting the family post-bereavement. These outcomes can only be achieved if palliative care knowledge and expertise are extended beyond the domain of specialist palliative care services to include the full scope of health and community-based care. These challenges and potential actions are common for several neurodegenerative pathologies, and recommendations are made for enhancing the training of neurology health professionals within the wider community.