A Multicenter Qualitative Investigation of the Experiences and Perspectives of Substitute Decision Makers Who Underwent Organ Donation Decisions

Abstract

This study described donor and nondonor family experiences with donation as well as lasting impacts. Addressing unanswered questions should be done in a place sufficiently remote from the donation event to enhance the family members' understanding and well-being.

A narrative review of family members’ experience of organ donation request after brain death in the critical care setting

“…Providing complete and accurate information in a timely fashion is important, but equally critical is the manner in which the information is delivered to the FDMs. HCPs are encouraged to employ multimodal communication, to ensure a proper setting for family meetings, and the presence of a support person [34]. The data indicate that the communication skills of OPO requesters can influence authorization decisions among FDMs [17,19,21,28,[35][36][37], although this can also be overrated as shown in a recent study [32].…”

“…FDMs have consistently expressed a need for additional knowledge and accurate information about organ donation to aid in their decision-making [26]. In a recent survey of 118 family members of patients in the ICU, only 32% could answer four questions about organ donation correctly [27].…”

“…This suggests that a proactive follow-up by the OPO (telephone call, card or letter) may help promote family wellbeing [63,68]. The absence of adequate bereavement support means that families have to live with unanswered questions [34,73]. Follow-up needs are of course variable and responses require flexibility: further research is needed to better understand FMs' needs in this field.…”

Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

“…Despite the central role of the substitute decision-making process, our understanding about the factors influencing the decision around deceased organ donation is restricted to few studies, most of which have been conducted outside of Canada 6. A qualitative study involving 27 SDMs in Ontario who had been involved in discussions regarding consent for organ donation found that although participants reported empathetic care from hospital staff, procedural (eg, communication) and situational (eg, a proper setting for family meetings) factors left family members ‘troubled by unanswered questions’ 7. Current research is insufficient to guide personalised strategies for supporting SDMs,8 which remain largely ad hoc rather than informed by evidence.…”

“…Therefore, understanding which factors best account for SDM decisions and how their views affect that process is of utmost importance. Most studies to date have not directly involved SDMs and have been limited by inappropriate sampling such as retrospective selection,7 9 10 which is associated with selection bias. Others have failed to use structured and validated models or frameworks in their design and analysis 6 11 12.…”