Introduction As respiratory muscles weaken home mechanical ventilation can be used by patients with Motor Neurone Disease (MND) to help support breathing and prolong life. We know little about what it is like to die while ventilation is in place, to have ventilation withdrawn, how decisions about these end of life wishes are made, or how patients and families are supported through this experience and into bereavement.
Aims To explore the use of home mechanical ventilation at the end of life for people with MND
Methods Qualitative interviews with 31 bereaved family members involved in the care of someone with MND using ventilation at the end of life. Thematic analysis was applied.
Results Preliminary findings show that planned withdrawal of ventilation can provide families with an important element of control, allowing patients more choice about the timing and manor death. Some patients initiated decisions about their wishes in advance allowing health professionals and family members to prepare. Others made more immediate decisions based on their currently quality of life. Family members often reported having little knowledge and understanding of how dying would occur. Some participants felt the ventilation had kept the patient’s body alive beyond the point of a natural death, blurring the nature of the death.
Conclusions Ventilation can have a profound impact on the death of the person with MND and subsequently, those close to them. For some this can be traumatic and poorly understood but when planned and implemented well, can be satisfying and cherished.
Impact This is the first work to explore the use of ventilation at the end of life for those with MND. It illustrates that more information and discussion with patients and families, is needed. This work will make an essential contribution to building an evidence based to guide healthcare professionals, inform families and support decision making.
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