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A conceptual model of family surrogate end-of-life decision-making process in the nursing home setting: goals of care as guiding stars
- Author:
- BERN-KLUG Mercedes
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 10(1), 2014, pp.59-79.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
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 generalised beyond nursing homes. (Edited publisher abstract)
A framework for categorizing social interactions related to end-of-life care in nursing homes
- Author:
- BERN-KLUG Mercedes
- Journal article citation:
- Gerontologist, 49(4), August 2009, pp.495-507.
- Publisher:
- Oxford University Press
This study aimed to develop a framework for organizing social interactions related to end-of-life care and to characterize the social construction of dying in two nursing homes in the US. Secondary analysis of qualitative ethnographic data collected before the death of 45 residents who were selected for the study on account of their "declining" health status. Field notes, medical chart data, and transcribed interviews were analyzed using qualitative descriptive methods guided by symbolic interaction and role theory. The data were also grouped by resident to facilitate the development of cases that illustrate the categories of social interactions. A second reader also categorized all the resident cases into one of five categories as a means of verifying the model. A new framework of five categories to name the stance toward the possibility of dying is then presented and illustrated with cases. The categories include: dying allowed, dying contested, mixed message dying, not dying, and not enough information. Over half the resident cases were classified as mixed message dying or not enough information, which speaks to the ambiguity regarding care plan goals found in the two nursing homes in the study. It is concluded that conversations about goals of care, and how these goals will be operationalized are important issues for discussion among residents (to the extent able), family, staff, and physicians.