Motor Neurone Disease study findings published in BMC Palliative Care

‘End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives’ was recently published by BMC Palliative Care. Members of staff at Dorothy House contributed to the Motor Neurone Disease study and were involved in recruiting participants.

The Motor Neurone Disease study

Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND.

This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.

This was a UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND, their family members, and bereaved family members. Sixty-two individuals took part in 53 interviews for the study.

The results

The findings ensure a better understanding of patient and family approaches to decision-making:

• Due to the uncertainty faced by those with MND, participants who were unwilling to discuss dying often preferred to make decisions in a timely manner, or default these decisions to others.
• How­ever, some did and wanted to make choices about their end-of-life. Proactive decisions, including advance care planning and withdrawal of treatment, were found to empower patients, providing a sense of control over the timing of their death.
• A significant portion lacked a clear understanding of the dying process and available options.

The study highlights the complex and varied nature of end-of-life decision-making in the context of ventilation technology and MND and the important role healthcare professionals can play in giving information, guidance.

You can read the publication here. Find out more about Dorothy House’s Centre for Education and Research here.