How can I support patients with ALS and their families in managing the disease and planning for end-of-life care?

Healthcare professionals can support patients with amyotrophic lateral sclerosis (ALS) and their families in disease management and end-of-life care planning by providing coordinated, multidisciplinary care tailored to the individual's needs.

• Early and clear communication: Ensure patients and families receive timely, accurate information about diagnosis, prognosis, and management from a neurologist experienced in ALS, facilitating informed decision-making and involvement in care planning.
• Multidisciplinary team approach: Care should be coordinated by a specialist multidisciplinary team including neurologists, specialist nurses, dietitians, physiotherapists, occupational therapists, speech and language therapists, respiratory specialists, and palliative care professionals to address the complex needs of ALS patients.
• Regular assessments: Conduct frequent, coordinated assessments (usually every 2–3 months) to monitor symptoms such as muscle weakness, respiratory function, nutrition, communication, cognition, psychological wellbeing, and social care needs, adjusting care plans accordingly.
• Support for cognitive and behavioural changes: Assess and manage cognitive impairment or frontotemporal dementia, ensuring care complies with the Mental Capacity Act 2005 and tailoring communication to the patient’s abilities.
• Symptom management: Address specific symptoms such as sialorrhoea, swallowing difficulties, respiratory decline, muscle cramps, and pain using appropriate pharmacological and non-pharmacological interventions.
• Provision of equipment and adaptations: Rapidly provide assistive devices, environmental controls, wheelchairs, and home adaptations to maintain independence and quality of life.
• Psychological and social support: Discuss the emotional impact of ALS regularly, offering psychological support and counselling to patients and families, and addressing social care needs.
• End-of-life care planning: Engage in early, sensitive discussions about future care preferences, advance care planning, and crisis prevention, involving specialist palliative care teams when complex needs arise.
• Continuity and coordination: Ensure all healthcare and social care professionals involved are informed of key decisions and changes, prioritising continuity of care and avoiding untimely case closure.

This comprehensive approach supports patients and families through the progressive nature of ALS, optimising quality of life and respecting patient autonomy throughout disease management and end-of-life care planning.