Conversations around critical illness outcomes and benefits from intensive care unit (ICU) treatment have begun to shift away from binary discussions on living versus dying. Increasingly, the reality of survival with functional impairment versus survival with a late death is being recognised as relevant to patients. Most ICU admissions are associated with new functional and cognitive disabilities that are significant and long lasting. When discussing outcomes, clinicians rightly focus on patients' wishes and the quality of life (QoL) that they would find acceptable. However, patients' views may encompass differing views on acceptable QoL post-critical illness, not necessarily reflected in standard conversations. Maintaining independence is a greater priority to patients than simple survival. QoL post-critical illness determines judgments on the benefits of ICU support but translating this into clinical practice risks potential conflation of health outcomes and QoL. This article discusses the concept of response shift and the implication for trade-offs between number/length of invasive treatments and change in physical function or death. Conversations need to delineate how health outcomes (e.g. tracheostomy, muscle wasting, etc.) may affect individual outcomes most relevant to the patient and hence impact overall QoL. The research strategy taken to explore decision-making for critically ill patients might benefit from gathering qualitative data, as a complement to quantitative data. Patients, families and doctors are motivated by far wider considerations, and a consultation process should relate to more than the simple likelihood of mortality in a shared decision-making context.
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