Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice

Abstract

The care of adult patients without decision-making abilities is a routine part of medical practice. Decisions for these patients are typically made by surrogates according to a process governed by a hierarchy of 3 distinct decision-making standards: patients' known wishes, substituted judgments, and best interests. Although this framework offers some guidance, it does not readily incorporate many important considerations of patients and families and does not account for the ways in which many patients and surrogates prefer to make decisions. In this article, the authors review the research on surrogate decision making, compare it with normative standards, and offer ways in which the 2 can be reconciled for the patient's benefit.

I Don’t Want to Be the One Saying ‘We Should Just Let Him Die’: Intrapersonal Tensions Experienced by Surrogate Decision Makers in the ICU

“…The internal struggles surrogates described in trying to make decisions according to what their loved one would want at a minimum raise practical questions about how to help surrogates follow a strict substituted judgment standard, as simply urging families to focus on "what the patient would want" may be insufficient when patient preferences conflict with family emotional needs. 5,6,29,30 These data do not allow us to comment on the ethics of substituted judgment. Some scholars have argued that surrogate decision making be reconceptualized as a process in which family interests are given more ethical consideration.…”

“…Some scholars have argued that surrogate decision making be reconceptualized as a process in which family interests are given more ethical consideration. 5 Surrogates' coping strategies and recommendations for clinicians suggest several ways that ICU staff could do more to support families. First, by eliciting communication preferences and explicitly acknowledging and attending to surrogate emotions, clinicians may uncover key barriers to decision making and alleviate family distress.…”

“…2,3 Concerns have been raised about the extent to which current approaches to decision making place undue strain on families and lead to decisions that do not accurately reflect patient values. [4][5][6] A recent systematic review found that at least one third of surrogates report negative emotional effects lasting months, and sometimes years, after making treatment decisions for others, including stress, guilt and doubt about whether they made the right choice. 7 Research on surrogate distress has been primarily retrospective, asking families to reflect back on decisions made in the past.…”

Expectations and outcomes of prolonged mechanical ventilation

“…(47) This decision has important implications for patients, their families, healthcare providers, and the healthcare system. (6) We found a dramatic degree of surrogate-physician discord and inaccuracy in expectations for outcomes that appeared to be related to the content of ICU-based interactions.…”

Incapacitated Patients’ Wellbeing: Surrogate Decision Making

“…However, the findings of Edwards et al, (2011) do follow the decision standards suggested by Berger, DeRenzo and Schwartz (2008). The standards are patients' known wishes, substituted judgments and best interests of the patient.…”