… I would like to discuss my longevity as my fear of life is greater than death … quote from a person with MND. With no known cure and no effective treatment yet available for Motor Neurone Disease (MND), this article focusses on quality of life, quality of care and quality of death, the three outcomes of a palliative approach to caring for people with MND (PwMND) and their family carers. A palliative approach emphasizes the need for a patient and family-centred care that focuses on the person and not only on the illness, the importance of therapeutic interactions between care providers and the patient and family, a clear communication all through the illness trajectory and it stresses in particular, the importance of goals of care and advance care plans.A palliative approach needs to be integrated into the care plan for PwMND from the time of diagnosis, aiming to optimise their quality of life by relieving symptoms, providing emotional, psychological and spiritual support pre-bereavement, minimising barriers to a good death and supporting the family post-bereavement. However, these outcomes cannot be achieved without the following cornerstones of a palliative approach to MND care which starts with an empathetic delivery of the diagnosis, the vital support of family carers, the involvement of MND Associations, the education and training of general health and community care practitioners and the connection between the informal caring networks with the formal networks, as exemplified by Compassionate Communities policies and practices.The present article describes a number of evidence-based initiatives from diagnosis to bereavement that need to be implemented in standard practice in order to improve the health and social care of PwMND and their family carers. The drive to find a cure should not detract from the fact that PwMND and their families still need to be supported physically and psychologically until then, by all service providers using a palliative approach, through the continuum of care from start to end.
Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease
