Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members’ experiences of responsibility

As the use of technology to sustain life increases, we need to question how much we expect of family members in providing care for those with complex interventions, such as ventilation, at home. This research underscores the critical role family members' play in home care for people with motor neurone disease and calls for a greater understanding of the impacts of maintaining responsibility for life-sustaining treatments. There is a need for better support and training for both family and professional caregivers to alleviate some of the responsibility placed upon family members.