Intensive care decision-making, survival and dying well: a mixed methods study with people who have been intensive...

Admission to the ICU involves experiential burdens and a risk of a negative dying experience if patients do not survive their critical illness. Many patients who are critically unwell, or their surrogate decision-makers, must decide about accepting ICU treatment without knowing what it is like. People who have been through ICU treatment can provide useful insights into what it might be like to die in ICU and what chance of survival makes ICU treatment acceptable to them.

This study utilised a mixed methods approach involving questionnaires and semi-structured interviews which were analysed using a reflexive thematic analysis approach. This was done to provide a deep and rich analysis of how participants' experiences of ICU treatment and end-of-life wishes affected their reflections about what it might be like to die on an ICU, and their willingness to accept ICU treatment again in the future.

Twenty-six people who had experienced ICU as patients were interviewed. Whilst some positive experiences were reported, participants thought the negative experiences associated with ICU made it likely that dying on ICU would be a negative dying experience. Being a patient in an ICU involved a confrontation with mortality, loss of control and total dependence, and was described as a transformative experience. Participants considered the chance of survival to be an important consideration in shared decision-making with ICU clinicians about ICU treatments. The median chance of survival that made ICU treatment acceptable was 30%.

An understanding of the experiences associated with being a patient in the ICU can inform how patients and clinicians consider the risk-benefit analysis of ICU treatment. The experiential harms of ICU admission and the risk of ICU treatment resulting in a negative dying experience may outweigh the survival benefit that ICU treatment will offer a patient when there is a low chance of survival.