ELPIS study

The study was carried out in the West Midlands, UK, a region with a diverse population and higher‑than‑average levels of illness and premature death. Families who have lived through the death of a relative in ICU were at the centre of the research.

ELPIS used a three‑phase qualitative research design. In the first two phases, we conducted in‑depth interviews with 25 bereaved family members whose relatives had died in an adult ICU following the withdrawal or withholding of life‑sustaining treatment. These interviews explored families’ experiences of communication, decision‑making, care during dying, and support after death.

The findings from these interviews were analysed using a structured, step‑by‑step method that allowed patterns and themes to emerge directly from participants’ accounts. This approach ensured that the results were firmly grounded in real experiences rather than preconceived assumptions.

In the third phase, we held an online co‑production workshop involving bereaved family members, ICU survivors, patient and public involvement (PPI) contributors, and ICU clinicians. Participants reviewed the developing model, shared reflections, and helped refine recommendations to make them realistic and usable in everyday clinical practice.

Families’ experiences clustered into four connected stages that together form the ELPIS Care Model.

1. Early recognition and preparation
   Many families arrived in ICU unprepared for how unwell their relative was. Clear, honest, and compassionate communication early in the ICU stay helped families understand what was happening and reduced shock and confusion later. When clinicians avoided difficult conversations or provided overly optimistic reassurance, families reported mistrust and found it harder to process events and grieve after the death. Knowing a patient’s previously expressed wishes, where these were available, made families feel more confident and less anxious.
   
   
2. Shared decision‑making about life‑sustaining treatment
   Families wanted to be involved in decisions, but most did not want to feel solely responsible. The best experiences occurred when clinicians offered a clear medical recommendation, explained it carefully, and guided families through decisions over time. Problems arose when responsibility felt transferred entirely to families or when discussions were rushed or poorly explained. Families needed time to absorb information, balance hope and reality, and reach a sense of readiness.
   
   
3. Care during withdrawal of treatment
   How care was delivered during the final hours mattered deeply. Privacy, flexible visiting, and being able to remain with a loved one were seen as essential to dignity. Families were reassured when they could see that comfort, pain relief, and symptom control remained a priority. In contrast, unmanaged symptoms, lack of privacy, or restricted access caused lasting distress and shaped negative memories of the death.
   
   
4. Care after death and during bereavement
   What happened after death was just as important as what happened before. Families valued time with their relative, sensitive preparation of the body, respectful handling of belongings, and meaningful mementoes when offered appropriately. Many participants, however, reported little or no information about bereavement support and struggled to access help later. This lack of follow‑up left some families to cope with prolonged or complicated grief alone.

Drawing together all phases of the study, we developed the ELPIS Care Model, a four‑phase supportive care framework covering:

1. Early recognition and preparation
2. Shared decision‑making
3. Active supportive care during treatment withdrawal
4. Care after death and bereavement

The model describes key practices needed at each stage, who should be involved, and the risks when support is missing. Importantly, it views bereavement care as an integral part of end‑of‑life care, not an optional add‑on.

The ELPIS study provides new, UK‑based evidence on how ICU teams can better support families facing the withdrawal or withholding of life‑sustaining treatment. By grounding recommendations in lived experience and refining them with patients, families, and clinicians, the ELPIS Care Model offers practical guidance to improve care, reduce long‑term distress for families, and support decision‑making that is compassionate, clear, and shared.

Future work will focus on testing and implementing the model in practice to assess its impact across different ICU settings.