A professional’s guide to end of life care in motor neurone disease (MND)

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22 Regular analgesics should usually be continued until death, even if oral medication is no longer possible due to dysphagia. Alternatives, such as suppositories or parenteral routes should be considered. Parenteral medication may be more conveniently given as a continuous subcutaneous infusion using a syringe pump. 29 Before putting any medication through a gastrostomy tube, check with a pharmacist that it will not harden and clog the tube or affect the drug’s action. 30 It is also important to check whether carers (family or paid workers) are able to administer other forms of medication. Some care agencies may be unable or unwilling for their staff to administer medication through a gastrostomy tube. Physiotherapy, including passive exercise, can ease the pain from immobile joints. 31 Some people with MND may find massage helpful for pain and spasticity. 32 All healthcare professionals have a role in prevention of pressure sores. Terminal restlessness This is the agitation sometimes seen in people just before death, which is usually associated with a reduced level of consciousness. A person may appear unconscious, restless and unsettled. They may seem disorientated, anxious, fidgety and may look scared or distressed. It can happen intermittently or be a persistent feature. 33 This situation can be distressing for families and carers as they can feel a lack of control over the situation. It’s important to keep them informed at all times. The following may help: • Ensure there is no physical cause for the agitation, such as pain or discomfort from poor positioning, a full bladder or packed rectum. 33 • Provide calm reassurance and spend time with agitated people and their family in a soothing environment. • If no reversible cause can be found, medication may be required to manage the agitation. The use of antipsychotic medication and benzodiazepines (such as midazolam), either separately or in combination, can usually control the distress. But these medications 25, 33 may result in the person being more sleepy. • In all cases where repeated doses of medication are needed, the use of a syringe pump may be a preferred method of administration. 34
Nutrition and hydration While most people stop eating and drinking in the final days of life due to reduced appetite and consciousness, distress should be lessened where possible by continuing to offer hydration. Support the dying person to drink if they wish to and are able to, but check for any swallowing problems and the risk of aspiration. 35 Hydration may be given by feeding tube. If a feeding tube is not available and there are concerns a patient is thirsty, subcutaneous fluids can be considered as a trial and then reviewed, although this may be at a reduced level. 35 It is important to explain the situation carefully to relatives or carers, who might fear the person with MND may die from starvation or dehydration. 35 Mouth care In the final days of life (for many conditions, not only MND), mouth breathing and minimal fluid intake can cause the mouth to become dry and make lips more likely to crack. 25 The mouth should be kept clean and moist using foam stick applicators; some people find crushed ice refreshing to suck. Relatives can be shown and encouraged to provide this aspect of care. It is also acceptable to use one of the person’s favourite drinks, whatever it is. Communicating with the person with MND This may become extremely difficult as the person with MND reaches end of life, but even if they are unresponsive, every attempt should be made to maintain communication. Eye movements and questions that only need a single word or yes/no answer may be used, alongside picture/alphabet boards or other communication aids as appropriate. 36 It is believed that hearing and touch are the last senses we are aware of, so talking reassuringly and touching someone is a natural and human expression of compassion. Caring for a person with MND at end of life I’m not afraid of dying, but I am afraid of how I’m going to die. Whenever I’ve broached the subject I’ve been told, ‘Don’t you worry about that. We’ll make sure you’re comfortable.’ But that doesn’t deal with the fears.” A person with MND 23
Page 1 and 2: A professional’s guide to end of
Page 3: Contents 5 Talking about end of lif
Page 6 and 7: It is also important that the langu
Page 8 and 9: Medication cannot be used to hasten
Page 10 and 11: Advance Decision to Refuse Treatmen
Page 12 and 13: Many hospices have a community pall
Page 14 and 15: o o o o o Are appropriate medicatio
Page 16 and 17: However, the NHS Blood and Transpla
Page 18 and 19: If palliative care includes referra
Page 20 and 21: 20 Someone may have used an ADRT to
Page 24 and 25: Key points on care at end of life
Page 26 and 27: Preparing the family for end life W
Page 28 and 29: References 28 1 Bäumer D, Talbot K
Page 30 and 31: How the MND Association can support
Page 32 and 33: 32 Regional care development advise
Page 34 and 35: Feedback form continued Were there
Page 36: About us The MND Association was fo

A professional’s guide to end of life care in motor neurone disease (MND)

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