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SESSION 1 JOINT OPENING SESSION

Palliative care for patients with neurological disease begins at the time of diagnosis; cure is not an option. Patients are in turmoil, facing their world disintegrating in front of them. Care needs to focus around the physical, improving their environment and controlling symptoms, as well as focusing on the emotional adjustment and on social and spiritual concerns. Patients will be grieving for their lost hopes and fears, for the life that they realise that they will not be able to enjoy and for unfulfilled dreams. At the same time, the family needs support to come to terms with the difficult situation that they face. Family members are often the key carers, fearful of what lies ahead, not knowing who to call and fearing that they will be abandoned in their hour of greatest need. Decision making in palliative care has to always weigh up the benefits against the risks and burdens to the patient in the broader context of their social environment as well as in the wider context of any co-morbidity. Improving quality-of-life requires an adjustment of hopes and expectations so that they are more achievable within the reality of disease, simultaneously with an improvement in all aspects of the patient’s reality of a lived daily experience on a day-to-day basis. Children in the family may often bear much of the burden of caring. When the patient is a young parent, children can feel culpable for the disease itself. Children need clear explanations of what is happening and to have their questions answered, knowing that they can ask more questions. Their school needs to be aware of a parent’s illness and may need a supportive letter from the clinical team to explain the stresses that the child is under. Many families overlook the profound bereavement that occurs as the child sees a parent’s health failing. Children pushed away, excluded from caring, can feel increased isolation and rejection. They often want to be involved in care; in bereavement this can be a source of support as much adjusting will have happened prior to the parent’s death. If the decision is made to cease treatment, such as discontinuing ventilation, the patient must receive full support and care until death occurs. It is the patient’s decision to consent to ongoing treatment, or to withdraw that consent. Such decisions need to be fully informed and every effort must be made to help the patient communicate their decision. In the event of the patient lacking capacity to take a decision, the clinician carries responsibility for a ‘best interest’ decision, taken in the best interest of the patient as an individual person.