Motor Neurone Disease (MND) is an incurable, progressive condition with an average prognosis of 2–3 years from onset of symptoms (Worms, 2001; Oliver 2019). NICE guidance (2016) recommends that a health care professional with expertise in palliative care should be an integral part of the MDT in managing often rapidly progressive symptoms, psychological distress and complex future care planning. Nutrition and weight loss are predictors of survival (Leigh et al, 2003) and often relate to progressive dysphagia (Heffernan et al, 2004).
Gastrostomy can be used to administer nutrition with studies suggesting this can both prolong survival and improve quality of life (Mazzini et al, 1995; Ganzini, 2006). It is important that the option to have gastrostomy is discussed at an early stage taking the patient’s personal preferences into account (MND association, 2019). Patients with MND often have other interventions to try and optimise QOL such as Non-Invasive Ventilation (NIV). Recent literature describes the withdrawal of NIV at the request of patients with MND (LeBon & Fisher, 2011; Messer et al, 2019) and the APM (2016) has issued guidance which considers the legal and ethical implications of this. However, a systematic literature search has found no such evidence or guidance on the withdrawal of gastrostomy feeding in patients with MND. We present the challenges faced when a patient with MND was transferred to hospice IPU requesting withdrawal of PEG feeding and the need for further research; as hospices may increasingly play a role in withdrawal of treatment in MND in future.
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