ELPIS Study

Optimising dEcision-making and support for famiLies of PatIentS who have life-sustaining treatments withheld/withdrawn in adult intensive care units

In intensive care units (ICUs), patient deaths often occur after decisions to limit life-sustaining treatments. This may happen when a patient deteriorates and does not show any signs of recovery and involves shared decision-making between families and clinicians regarding limiting or stopping interventions. Since many patients haven't expressed their preferences, families are expected to advocate for them. However, this decision-making and witnessing the dying process can have an impact on family members that may lead to psychological distress and short or long-term negative emotions. There is limited research on how family members experience end-of-life decision-making and the patient’s dying process in United Kingdom ICUs and what may be perceived as compassionate care during this time.

The aim of this study is to develop a theoretically driven experience-based model of care to support family members’ end-of-life decision-making and improve practices associated with withholding/withdrawing life-sustaining treatments in adult ICUs. 

We will achieve this by:

• investigating how family members experience the operationalisation of withholding/withdrawing of life sustaining treatments process and death and dying. 

• examining (any) psychological impacts that family members perceive were a consequence of involvement in end-of-life decision-making and how they were supported and managed these. 

Funded by:

This study/project is funded by the National Institute for Health and Care Research (NIHR) [Research for Patient Benefit (NIHR206331)]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Who are the research team?  

The research team is made up by academics and researchers working at the University of Birmingham with experience in qualitative end-of-life research, ICU clinicians who work at Sandwell and West Birmingham Hospitals NHS Trust, and a member of the public. A research fellow is also supporting the research team.  

Research team members:

• Dr Nikolaos Efstathiou, University of Birmingham
• Professor Anne Topping, University of Birmingham
• Dr Ping Guo, University of Birmingham  
• Dr Annie Pettifer, University of Birmingham  
• Dr Fotini Kristina Michaela Diridis, Sandwell and West Birmingham NHS Trust  
• Mrs Yvonne Gately, Patient & Public Involvement   
• Mrs Rebecca Mcfadzean, Sandwell and West Birmingham NHS Trust 
• Dr Sepideh Setayesh, Clinical Research Fellow 

 

 

Project dates

June 2024 - November 2025

Enquiries

Dr Nikolaos Efstathiou (Project Lead)
Email: n.efstathiou@bham.ac.uk 

Dr Sepideh Setayesh (Clinical Research Fellow)
Email: s.setayesh@bham.ac.uk