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Understanding the experience of DePPaRT families with end-of-life decision-making, and decision-making about organ donation and research participation
Investigators: Jennifer Chandler, Faculty of Law, University of Ottawa; Vanessa Gruben, Faculty of Law, University of Ottawa; Janet Squires, School of Nursing, University of Ottawa; Amanda van Beinum, Children's Hospital of Eastern Ontario Research Institute
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Since the articulation of the brain-based criterion of death in the late 1960s, most deceased organ donation in North America has occurred following the neurological determination of death (NDD). Donation after a circulatory declaration of death (DCD) has been infrequent in North America, but has recently begun increasing. In 2007, UNOS (the United Network for Organ Sharing) proposed rules relating to DCD in the United States, and Canadian consensus guidelines on DCD were published in 2006. Several aspects of DCD continue to attract ethico-legal concern and uncertainty. One of these concerns has to do with the length of the waiting period between cardiac arrest following the withdrawal of life sustaining therapies (WLST) and the removal of organs for transplantation. Concerns have been raised about the possibility of auto-resuscitation (the spontaneous return of cardiocirculatory function) during this time period. The DePPaRT study aims to gather knowledge useful to determining the appropriate waiting period prior to removal of organs in DCD. The families approached to participate in DePPaRT will already have made a decision to withdraw life-sustaining therapy, and some will also have decided for or against DCD. Our study focuses on the sub-group who were offered DCD, and aims to gather information about the experience of participating in the DePPaRT process of physiological monitoring after WLST, as well as the experience of DCD.
This qualitative study seeks to assess the experiences of substitute decision makers related to:
(a) deciding for or against DCD
(b) their feelings about the organ donation process and the outcomes achieved (e.g., whether or not donation proceeded successfully); and
(c) participating in the DePPaRT study, including the informed consent process for participation and the effect of participation on the bedside experience (e.g., perception of the quality of end-of-life care received).
This qualitative study seeks to assess the experiences of substitute decision makers related to:
(a) deciding for or against DCD
(b) their feelings about the organ donation process and the outcomes achieved (e.g., whether or not donation proceeded successfully); and
(c) participating in the DePPaRT study, including the informed consent process for participation and the effect of participation on the bedside experience (e.g., perception of the quality of end-of-life care received).