ELPIS study

• Research type

  Research Study

• Full title

  Optimising dEcision-making and support for famiLies of PatIentS who have life-sustaining treatments withheld/withdrawn in adult intensive care units: A grounded theory study (ELPIS Study)

• IRAS ID

  334017

• Contact name

  Nikolaos Efstathiou

• Contact email

  n.efstathiou@bham.ac.uk

• Sponsor organisation

  University of Birmingham

• Duration of Study in the UK

  1 years, 5 months, 27 days

• Research summary

  This study aims to improve end-of-life decision-making, care and support for patients and their family in intensive care units (ICUs).

  Every year, many patients are admitted to ICUs. While many will get better, one out of five patients will die in ICU. When it becomes clear that a patient cannot get better, a decision may be made to stop treatments, like turning off life-support machines or discontinuing certain medications. Most ICU patients are not able to make decisions themselves, so healthcare staff will involve family members or surrogates in decision-making. Being part of end-of-life decisions and the process of stopping treatments can be very stressful for family members. They can become anxious, depressed, and have long-lasting feelings of guilt or loss. We aim to explore these experiences, to develop
  ways (what we call a supportive care model) to improve decision-making and management of stopping life-sustaining treatments. Our goal is to reduce the impact on family members and improve end-of-life care in ICUs.

  During this 18-month study we will interview 40 family members of patients who died in ICU after a decision to stop life-sustaining treatments. We will explore family members’ recollections of end-of-life decision-making and their experiences and involvement in withholding/withdrawal of life-sustaining treatments. We will ask about their memories of their relative dying in ICU and how they managed afterwards. We will conduct interviews with relatives or next of kin drawn from across the West Midlands. We intend to talk with a wide range of families, representing our diverse community. The study findings and draft of our supportive care model will be presented, discussed, and refined during a half-day stakeholder (n=30) event where we will also work together to design the next stage of research to test the model in practice.

• REC name

  London - Dulwich Research Ethics Committee

• REC reference

  24/PR/0871

• Date of REC Opinion

  12 Sep 2024

• REC opinion

  Further Information Favourable Opinion