Project duration:
October 2020 - June 2024
Funder:
University of Nottingham Anne McLaren Research Fellowship
Project staff:
Dr. Eleanor Wilson
Professor Christina Faull – Consultant in Palliative Medicine and MND, LOROS Hospice, Leicester
Jonathan Palmer – Respiratory Nurse Consultant, University Hospitals Plymouth
Summary of findings:
Lay summary for final report
VentMND June 2024
The study explored patient and family experiences of making decisions about using ventilation at the end of life. Motor neurone disease (MND) causes muscles to gradually weaken. Over time, patients lose their ability to move, speak and breathe. Ventilation, using a close fitting mask (Non-invasive ventilation: NIV) or tube in the neck (tracheostomy/invasive ventilation: TV) can help support breathing. As their condition worsens, patients use ventilation for longer until they cannot breathe without it. They then wish to decide whether or not they want to keep using ventilation. Stopping, or withdrawing, ventilation at this stage means the patient would quickly die.
We know that withdrawing ventilation is stressful and challenging for health professionals but we do not know what patients or family members think about this, how they make decisions about staying on or stopping ventilation, what their concerns might be or what the longer-term impact is for families when the patient dies. We think this will be valuable information that can be applied to other conditions where ventilation is used.
This UK-wide study examines how people with MND and their families make decisions about using home mechanical ventilation at the end of life. Flexible interviews were used to speak to 16 people living with MND, 10 family members, and 36 bereaved family members.
The study shows the challenges faced by both people living with MND who have ventilation and their family members. For family members managing ventilation at home can be a big responsibility. Homecare workers can be really important in support patients at home, but they are often thought to lack the right training to managing home ventilation and people with more advanced MND. Information of interviews with bereaved family members suggests that having ventilation can making it difficult to know when someone has died, as the ventilation continues. Some also reported being upset when they thought that the ventilation was prolonging dying for their loved one.
Key findings show the personal nature of end-of-life decisions, influenced by quality of life, symptom control, the impact on family, and personal beliefs. Decision-making is complex, ever changing and often involves many people, with family members frequently playing a critical role in decision-making. Many patients in the study were hesitant to make formal end-of-life plans, reflecting a reluctance observed in other studies. This sometimes came from a lack of understanding about the dying process and available support, highlighting the need for better communication and guidance from healthcare professionals.
The uncertainty of MND's progression often made these decisions about future ventilation use challenging. The study found that many people struggled to make decisions in advance, often wanting to wait until they had a clearer picture of what was involved. The findings
Outputs:
Wilson, E., & Turner, N. (2024). Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease. International Journal of Qualitative Methods, 23, https://doi.org/10.1177/16094069241251537
Wilson, E., Palmer, J., Armstrong, A., Messer, B., Presswood, E., & Faull, C. (2024). End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives. BMC Palliative Care, 23(1), 115. https://doi.org/10.1186/s12904-024-01443-1
Wilson, E., Lee, J-S, Wenzel, D and Faull C (2022), The Use of Mechanical Ventilation Support at the End of Life in Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A Scoping Review. Brain Sciences, 12(9): p. 1162 https://www.mdpi.com/2076-3425/12/9/1162
24.09.2024 East Midland Palliative Care Research and Audit Annual Meeting, Living with tracheostomy ventilation, implications for quality of life (online)
10.09.2024 Scarborough and North Yorkshire Specialist Palliative Care Team, education event, Complex decision making in MND: Patient and family experiences (online)
14.06.2024 HMV Conference, Guys and St. Thomas’ Hospital, London, Complex decision making in MND: Patient and family experiences
18.04.2024 10th South West Peninsula Symposium on Home Mechanical Ventilation, Taunton – Making end of life decisions about home mechanical ventilation: Patient and family perspectives
13.12.2023 Marie Curie Hospice West Midlands – Lunch and Learn seminar - Shifted deaths: the use of home mechanical ventilation for Motor Neurone Disease (MND) (online)
6-8.12.2023 International Symposium on ALS/MND, Switzerland
- Oral presentation - Making end-of-life decisions about home mechanical ventilation: Patient and family perspectives
- Poster - Responsibility in caring for those with MND and ventilation at the end of life: bereaved family member perspectives
10.11.2023 SiLVaH Annual Conference, Newcastle End of life decision making with patients with MND using home ventilation
26.09.2023East Midland Palliative Care Research and Audit Annual Meeting, Closing the Gaps (Online)
09.02.2023 Marie Curie Research Conference Shifted deaths: the use of home mechanical ventilation for Motor Neurone Disease (MND) https://vimeo.com/800499794 (online)
13.06.2022 MAPP (Mental Health, Ageing, Public health and Primary Care) group seminar https://le.ac.uk/mapp – University of Leicester (online)
3-5.03.2022 JIVD ERCA conference 2022, Lyon, France, 16th International Conference on Home Mechanical Ventilation, and 7th European Respiratory Care Association Congress End of life decision making with motor neurone disease patients on Home mechanical Ventilation (online poster)