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Here are key bullet points on end-of-life care for Motor Neurone Disease (MND):
🧠 Understanding MND Progression
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MND is a progressive, incurable neurological disease.
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End-of-life phase typically involves increasing weakness, fatigue, respiratory failure, and swallowing/speech difficulties.
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Cognitive and emotional changes (e.g. frontotemporal dementia) may occur in some patients.
🫁 Symptom Management
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Breathlessness: Use non-invasive ventilation (NIV); opioids and anxiolytics for symptom relief.
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Secretions: Anticholinergics (e.g. hyoscine, glycopyrronium) for drooling or respiratory secretions.
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Pain: Usually musculoskeletal or related to immobility; managed with analgesics.
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Anxiety & agitation: Benzodiazepines or appropriate palliative sedatives.
🗣️ Communication Support
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Use of augmentative and alternative communication (AAC) tools (e.g. eye gaze devices, writing boards).
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Early planning for communication loss is essential.
🥣 Nutrition and Hydration
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PEG/RIG feeding may already be in place; consider goals of care.
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Reduced intake is natural near end-of-life; careful oral care is essential.
🧑⚕️ Advance Care Planning (ACP)
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Discuss and document patient wishes early:
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Preferred place of care and death.
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Do Not Attempt Resuscitation (DNAR) decisions.
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Ventilation withdrawal wishes.
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Consider Advance Decision to Refuse Treatment (ADRT) or Lasting Power of Attorney.
❤️ Emotional and Psychosocial Support
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Support for patient and family/caregivers.
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Address grief, anxiety, and existential concerns.
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Involve specialist palliative care team early.
🕊️ End-of-Life Indicators
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Significant respiratory decline (e.g. reduced effectiveness of NIV).
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Difficulty swallowing food/liquids or increased choking.
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Rapid functional decline, weight loss, or increased sleepiness.
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Recurrent infections or hospital admissions.
⚰️ Care at Time of Death
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Provide comfort-focused care.
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Anticipatory prescribing (e.g. for pain, secretions, breathlessness).
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Support dignity, privacy, and cultural/religious preferences.
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