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© The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver (http:// creat iveco mmons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Critical care has made great strides in the last 50 years. Advances have led to significant reduction in hospital mortality despite an increase in severity of illness [1]. Though encouraging, survivors of critical illness often endure long-term sequelae across multiple domains which can be debilitating and life changing. These new or worsening impairments often persist years beyond index hospitalization. The impact of these impairments on patients, families, and healthcare systems cannot be underestimated [2]. Although majority of patients are grateful to have survived even in the face of significant disability, some may regret having survived because of new or worsened disabilities. Research in critical care has focused on mortality as the primary outcome of interest. The choice of a binary outcome: mortality being the focus of most trials is rational and intuitive. The importance of survival remains beyond debate, although intensive care unit stays for some represent a temporary stop in the natural dying process. Realistically, majority of survivors have expectations beyond survival [3]. Therefore, the current practice of assessing interventions primarily on the basis of how effectively they influence mortality only deserves scrutiny. Non‐mortality endpoints in clinical trials Surviving an ICU stay matters overwhelmingly. Conditional on survival, there are multiple other facets which matter substantially [4]. A study among survivors demonstrated that some perceived the burden of survivorship as “worse than death” [5]. Although a minority hold this view, most patients and caregivers are accepting of tragic trade-offs associated with survival. From a practical standpoint, “affective forecasting” in the setting of new disabilities remains challenging and is unpredictably influenced by patients’ resilience and adaptation [6]. This underpins the importance of looking beyond mortality and derived measures. So how do we identify areas which deserve prioritization in terms of developing and testing treatment strategies based on patients’ perspectives? Current critical care literature is rife with trials which have not demonstrated meaningful mortality reduction, while this could be attributed to trials being under-powered or study populations being heterogeneous, the trend remains disappointing. A systematic review of 212 trials provided no conclusive evidence of any single pharmacological intervention translating to mortality benefit [7]. Interestingly, another meta-analysis concluded that patient-important outcomes other than mortality were seldom primary outcomes [8] and commonly used surrogates did not directly matter to patients [9]. With this background, our current framework affords a limited insight into the impact of various interventions in this growing population. These issues are being increasingly recognized, culminating in calls for more efficient, patient-centered research [10]. Substantial work has been done in this area leading to development of core-outcome sets and validated Open Access