The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy

Objective: This study examines the potential role for palliative care servi ces in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families. Methodology: Semistructured interviews were conducted in South Australia wi th nine bereaved and four current family members of individuals with muscul ar dystrophy or spinal muscular atrophy. Issues explored during interview i ncluded: (i) the family perceptions of the difficulties in caring; (ii) the psychological and physical resources which were available to assist them; and (iii) family recall of the management of the terminal phase of the illn ess. Results: Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support fo r siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives. Conclusions: The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although m any individuals with these conditions will die following an acute event, pa lliative care services may be appropriate for those who require a period of terminal care at home.