A Conceptual Model of Family Surrogate End-of-Life Decision-Making Process in the Nursing Home Setting: Goals of Care as Guiding Stars

Abstract

An increasing proportion of dying is occurring in America's nursing homes (NH). Family members are involved in (and affected by) medical decision-making on behalf of NH residents approaching the end of life, especially when the resident is cognitively impaired. This article proposes an empirically derived conceptual model of the key factors NH family surrogate decision-makers consider when establishing or changing goals of care and the iterative process as applied to the NH setting. This model also establishes the importance of family social role expectations toward their loved one as well as the concept, “stance toward dying,” as key in establishing or changing the main goal of care. NH staff and physicians can use the model as a framework for providing information and support to family members. Research is needed to better understand how to prepare staff and settings to support family surrogate decision-makers, in particular around setting goals of care. The model can be generalized beyond nursing homes.

KEYWORDS:

• advance care planning
• advance directives
• narrative
• surrogate

ACKNOWLEDGMENTS

The author thanks Dr. Sarah Forbes Thompson for the use of the original data which was funded through the NIH (NINR R15NR04974) and the John A. Hartford Foundation Social Work Initiative for supporting the secondary analysis. Dr. Bern-Klug also thanks the University of Iowa Program in Bioethics and Humanities Research Group and the School of Social Work Faculty Development group for feedback on an earlier version of this article.