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Revering Individual Autonomy During Goals of Care Family Meetings

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Koutsouras, Eastwood, and Krishnamurthy (2021) describe an extraordinarily challenging case involving an incapacitated critically ill patient, and a surrogate family member with both speech, and language limitations that had to… Click to show full abstract

Koutsouras, Eastwood, and Krishnamurthy (2021) describe an extraordinarily challenging case involving an incapacitated critically ill patient, and a surrogate family member with both speech, and language limitations that had to communicated via two interpreters. The authors allege that family visiting restrictions, widely implemented in 2020 to limit the spread of Covid-19 in hospitals, were an important factor in the surrogate’s decision to withdraw life support. As described, it seems like the surrogate made the decision based on her own judgment, and perhaps she was not instructed to speak as the patient would if he was aware and competent. This commentary is intended to highlight the fundamental role of surrogates in extending the patient’s autonomy, and the importance of educating clinicians in training in the process of family meetings. Family meetings are of paramount importance in the care of critically ill patients, especially when they cannot express their wishes. These meetings give clinicians the opportunity to meet with surrogates (close family members or friends) to share important information, including the status of the patient, the prognosis, and to clarify the goals of care.(Widera et al. 2020) Clinicians from many specialties and levels of training are tasked with conducting them. However, inexperience, barriers to communication, and the difficult nature of discussing grim prognosis can complicate their outcome. Notably, residents in training have expressed a lack of specific instruction in this topic (Stevens et al. 2002). Accordingly, end-of-life care occupies only a minor section of medical textbooks, lectures and of most medical conferences content. Consequently, residents have minimal training in these difficult discussions, and are prone to make mistakes. Surrogates tend to project their own preferences when deciding for their loved ones (Fagerlin et al. 2001). Therefore, it is fundamental to highlight that the purpose of their participation in the decision-making process is to assess, as accurately as possible, what the patient would say if they were capable to speak. They act as decision makers because it is inferred that they know the patient best, since they have a close relationship with them. When they speak as the patient it constitutes an extension of the individuals’ autonomy. Three ethical principles are widely accepted as standard practices of surrogate decision making (Cunningham et al. 2018). Unfortunately, it is known that clinicians that participate in family meetings only rarely explain these standard principles, or how to apply them to surrogates (Cunningham et al. 2018). The first standard requires that if an advance directive exists, it should be followed. Advance directives are important documents that are a direct manifestation of the patient’s wishes, however they rarely exist in the charts of dying hospitalized patients. Despite being mandated by the self-determination act (Silverman, Vinicky, and Gasner 1992), most patients admitted to the hospital lack them. Even when they exist, they rarely include a thorough description of the patient’s wishes. Perhaps this is the result of our general discomfort about talking about death, and the challenge of documenting such difficult conversations. Consequently, clinicians often have to identify, and rely on a surrogate decision-makers to predict the patient’s wishes. This occurs quite often, as it is estimated that in about 70% of the cases in which the patient is incapacitated, a surrogate is involved in decision making at the end of life (Lipnick et al. 2020). The second standard requires that a surrogate should make decisions as the patient would do so, if he or she was competent and aware. This is also known as the substituted judgment standard and is the main focus of this commentary. Surrogates need time to think and to remember conversations that they had with their loved ones. Clinicians should be attentive to statements like: “he would never want to be dependent on a machine,” or “he would like to

Keywords: decision; family meetings; goals care; family; autonomy; patient

Journal Title: AJOB Neuroscience
Year Published: 2021

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