This section highlights key areas for consideration for effective symptom management, which will be managed alongside support for communication, swallowing and cognitive changes with a proactive, multidisciplinary and person-centred approach.
People living with neurological conditions often experience complex, condition specific symptoms that change over time that affect physical function, communication, cognition, nutrition and emotional wellbeing, requiring skilled palliative and end of life care.
There may be no clear ‘dying phase’ as some people may decline slowly with repeated crises making it challenging to recognise when a person is nearing the end of their life.
Symptom management in progressive neurological disease
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People living with progressive neurological conditions often experience complex, changing needs which can include progressive
muscular weakness
cognitive and behavioural change
difficulty maintaining nutritional needs
breathing difficulty
They can also experience non motor symptoms which can include
constipation
pain
spasticity
anxiety
low mood
Whilst not exhaustive, the expanded sections below focuses on some of the key considerations of symptom management and are there to support clinicians involved in prescribing, monitoring, rehabilitation, nutritional support and day‑to‑day symptom assessment.
Pain may be neuropathic, musculoskeletal or related to immobility and spasticity.
Use holistic assessment to identify cause and impact
Consider both pharmacological and non-pharmacological approaches
Review regularly, particularly as communication becomes more challenging.
Plan for how to give medications when the oral route is not possible
Breathlessness can occur due to respiratory muscle weakness, aspiration or co-existing conditions.
Optimise positioning, pacing and energy conservation
Use both pharmacological (the patient may be prescribed opiates such as morphine and lorazepam which can help) and supportive strategies
Consider anticipatory prescribing in advanced disease
Some patients may choose to have non invasive ventilation (NIV) to help ease the effort required to breath. This treatment will involve the multi disciplinary team
Spasticity and muscle weakness can significantly affect comfort, mobility and function.
Assess the impact on daily activities and care needs
Combine medication management with physiotherapy and positioning
Review treatment effectiveness and side effects regularly
Consider pressure area care and supported positioning
Incorporate occupational therapy input, including the use of equipment and aids
Excess secretions can be distressing and difficult to manage, particularly at end of life.
Identify contributing factors such as swallowing difficulties or reduced mobility
Use non-drug measures alongside pharmacological options where appropriate
Involve speech and language therapy where possible
Regular medication review is essential as conditions progress.
Assess ongoing benefit, burden and route of administration
Simplify regimens where possible
Anticipate future needs, including alternative routes in advanced disease
Consider de prescribing if burden, weakness or sedation outweigh the benefit
Communication, cognition and swallowing
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As neurological disease progresses, difficulties with speech, communication, swallowing and cognitive or behavioural change often emerge.
This section discusses key considerations, highlighting the roles of speech and language therapy, dietetics, occupational therapy, nursing and medical staff in recognising risk, adapting care and supporting patients and families.
It is relevant to all professionals involved in delivering palliative and end of life care.
As disease progresses, and muscles in the tongue, mouth and throat become weakened, speech may become unclear or lost (dysarthria), and patients may rely on non-verbal communication.
Assess communication abilities regularly
Use alternative and augmentative communication methods (e.g. communication aids, gestures, written tools) as the person prefers
Ensure all team members and family understand how the person communicates
Prioritise maintaining autonomy and involvement in decision-making.
Cognitive impairment, including changes in memory, insight, behaviour and decision-making, may develop or progress.
Recognise fluctuating capacity and support shared decision-making where possible
Adapt communication approaches to reduce distress and confusion
Support families to understand and respond to behavioural changes
Consider the impact on advance care planning and consent.
Swallowing difficulties (dysphagia) can increase the risk of aspiration, weight loss and distress.
Identify early signs such as coughing, choking or prolonged mealtimes
Adapt food and fluid consistency in collaboration with speech and language therapy and dietetics
Balance nutritional needs with comfort and patient preferences, particularly at end of life
Consider anticipatory discussions about feeding options and future care decisions – some patients may choose to have a gastrostomy.
