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

J Paediatr Child Health. 1999 Jun;35(3):245-50. doi: 10.1046/j.1440-1754.1999.00351.x.


Objective: This study examines the potential role for palliative care services 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 with nine bereaved and four current family members of individuals with muscular dystrophy or spinal muscular atrophy. Issues explored during interview included: (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 illness.

Results: Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for 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 many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Advance Directives
  • Bereavement
  • Child
  • Continuity of Patient Care
  • Female
  • Humans
  • Male
  • Muscular Atrophy, Spinal / therapy*
  • Muscular Dystrophies / therapy*
  • Needs Assessment*
  • Nuclear Family
  • Palliative Care / organization & administration*
  • Parents / psychology
  • Respiration, Artificial
  • Social Support
  • South Australia
  • Terminal Care / standards*