The Relevance of Ill-Being to Critically Ill Patients-Without-Proxies

Abstract: Patients-without-proxies (PWPs) are incapacitated patients who need medical care but have no advanced directive or living will and no designated or identifiable surrogates, making their values unknown. Despite PWPs representing almost a quarter of incapacitated ICU patients (White et al. 2006), research on PWPs is in a “dismal state,” signaling an “urgent need for research to identify medical decision-making approaches” that involve them (Kim and Song 2018, 1233). Empirical evidence—including our own in the field of burn care—demonstrates that PWPs are less likely to receive comfort care despite eventually succumbing to life-threatening injuries. This may be due in part to prognostic uncertainty when it comes to medical futility and an inclination to err on the side of administering treatment. However, since ICU treatment is far from benign (especially in burn care), many PWPs who end up passing away are exposed to greater harm than their non-disadvantaged peers. As an additional consideration to futility, we propose that some harms experienced by patients qualify as substantive harms—i.e., that some patients experience ‘ill-being’ (Kagan 2014). Ill-being differs from the common understanding of harm in that it represents more than a mere deprivation of well-being: it is not just something that is not worth having, it is worth not having. We propose that the predictable presence of ill-being in a patient’s medical course is a helpful and morally relevant consideration to decision-making. We argue that it is an especially relevant consideration for PWPs who face substantial prognostic uncertainty.

Haig Yenikomshian, MD – USC Keck School of Medicine, Division of Plastic Surgery; Jonathan Pugh – Uehiro Center for Practical Ethics, University of Oxford; dominic Wilkinson – Uehiro Center for Practical Ethics, University of Oxford