Integrating palliative care for patients with motor neurone disease
Motor neurone disease (the most common form of which is amyotrophic lateral sclerosis) is a progressive neurological disease that causes muscle weakness, disability and eventual death from respiratory failure. Most patients die within 3 to 5 years of diagnosis, although a small percentage survive much longer.
Most patients with motor neurone disease are very well informed about their condition and welcome a proactive approach in decision-making processes. Cognitive impairment, particularly frontotemporal dementia, can be a feature of motor neurone disease, making early advance care planning, including the appointment of a substitute decision-maker, especially important.
A specialist, multidisciplinary team approach for management of motor neurone disease, including a palliative care specialist, is best practice. Introduce a needs-focused palliative approach to care alongside disease-orientated management early after diagnosis. An integrated, coordinated, palliative approach to care has been associated with enhanced quality of life for patients and carers, reduced hospitalisations and improved survivalShoesmith, 2020.
The role of the palliative care specialist or team is to assist the multidisciplinary team to manage symptoms, optimise physical independence, discuss advance care planning, and support the patient, family and carers through existential and social issues. Palliative care services can provide support even when specialist multidisciplinary motor neurone disease services are not available. Timing of specialist palliative care referral is based on patient, family or carer needs—see Specialist palliative care services.
Palliative care teams also have a role in supporting healthcare professionals. Patients with motor neurone disease are often a similar age to clinical staff and caring for them can be challenging—see Healthcare professional wellbeing in palliative care.
For further advice on managing motor neurone disease, see the Neurology guidelines and the Motor neurone disease aspects of care: for the primary health care team resource published by MND Australia.