title: Assisting patients with motor neurone disease to make decisions about their care.
abstract: Motor neurone disease (MND), is a progressive terminal illness affecting the central nervous system, causing paralysis of the muscles affecting limb movement, breathing and bulbar function, with an average life expectancy of 2-4 years. Patients are presented with repeated loss and the constant need to make adjustments to their lifestyle and expectations. Within palliative care there has been a move to formalise planning by undertaking advance care planning, giving the patient the opportunity to plan whether they would consider medical interventions and how they would like their care and death to be managed. There are now a multitude of forms and documents to complete if the patient is willing to do so. Advance care planning may not be something all patients wish to embrace, and this poses the question of whether there are cases where the repeated demand to think forward to a time when further losses are experienced is serving the agenda of the health professional at the expense of the patient. Nevertheless, health professionals might be concerned that a delay in decision making could impact on the patient's future care. There is potential for conflict between the wish of the patient--to remain focused on the positive--and the health professional's perception of the benefits of completing an advance care plan or discussing interventions which, if persued, might lead to a breakdown of the therapeutic relationship. A more flexible approach, focusing on the agenda set by the patient, underpinned by a therapeutic and trusting relationship, can avoid distress for the patient, while ensuring good care and the best outcome for the patient.
authors.affiliation: Linical Nurse Specialist in Palliative Care, Phyllis Tuckwell Hospice, Surrey, UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Gale
mesh_terms: D003657:Decision Making; D006801:Humans; D016472:Motor Neuron Disease / Q000523:psychology / Q000628:therapy*
keywords: Advance care planning; Communication; Feeding; Motor neurone disease; Palliative care; Ventilatory support