In This Together: Navigating Ethical Challenges Posed by Family Clustering during the Covid‐19 Pandemic

Abstract

Harrowing stories reported in the media describe Covid‐19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision‐making by reducing available surrogate decision‐makers for incapacitated patients, increases the emotional burdens of surrogate decision‐makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision‐making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience.

COVID-19 ARDS and Posttraumatic Stress Disorder in Family Members After ICU Discharge—Reply

“…We agree with Dr Weber and colleagues that family clustering is a valid explanatory variable for mental health symptoms in family members of ICU patients with COVID-19 ARDS. The 3 ethical challenges inherent to family clustering are indeed met during the COVID-19 pandemic . In our study, optimal shared decision-making was hampered by restricted visitation policies, emotional burden of surrogate decision makers was increased, and the higher prevalence of PTSD-related symptoms in family members reporting low social support might indirectly reflect health disparities.…”

Situation, Education, Innovation, and Recommendation: A Large-Scale Systematic Review of Advance Care Planning in the Age of COVID-19

“…The manuscripts within the Recommendation category emphasized the need for ACP to be patient- and family-centered, addressing both general and acute serious illness-specific preferences [ 124 , 125 , 126 ]. The authors of the papers within this category also suggested the necessity of innovations in ACP, including, again, the use of telehealth to facilitate discussions [ 126 , 127 , 128 , 130 , 145 , 146 , 147 , 148 ], and temporary policy changes or innovations to ease the completion and accessibility of ACP documents [ 135 , 138 , 145 , 146 , 147 , 148 ]. However, the urgency of the situation also highlighted the potential for misunderstandings and mistrust [ 125 , 137 ], suggesting the importance of clear, empathetic communication and ongoing dialogue [ 133 , 141 , 149 ].…”

“…The urgent focus on acute care for COVID-19 patients also often overshadowed the need for ACP, leading to missed opportunities for proactive care planning, especially for high-risk populations. Family clustering of COVID-19 was also identified as a barrier to ACP in one study [ 147 ].…”

COVID-19 ARDS and Posttraumatic Stress Disorder in Family Members After ICU Discharge

“…We believe that family clustering and its consequences may offer a plausible alternative explanation of these data. Our research indicates that family members of ICU patients with COVID-19 often experienced “a unique and significant combination of guilt and denial,” as many believed that they caused the patient’s infection and could not understand why they survived while the patient remained critically ill . In addition, because COVID-19 often affected family members concurrently, these individuals may have experienced their own COVID-19 illness while also supporting a patient hospitalized in the ICU.…”