Potential Donor Families' Experiences of Organ and Tissue Donation–related Communication, Processes and Outcomes

Abstract

We aimed to describe the experiences of families of potential organ and tissue donors eligible for donation after circulatory death or brain death. Forty-nine family members of potential donors from four Melbourne hospitals were interviewed to assess their experiences of communication, processes and the outcomes of donation. Interviews were recorded, transcribed verbatim and analysed thematically. Families expressed a range of perspectives on the themes of communication, hospital processes and care, the processes of consent and donation and reflected on decisions and outcomes. They expressed satisfaction overall with communication when receiving bad news, discussing death and donation. Honest and frank communication and being kept up-to-date and prepared for potential outcomes were important aspects for families, especially those of post circulatory death donors. Participants reported high levels of trust in healthcare professionals and satisfaction with the level of care received. Many donor families indicated the process was lengthy and stressful, but not significantly enough to adversely affect their satisfaction with the outcome. Both the decision itself and knowing others' lives had been saved provided them with consolation. No consenting families, and only some non-consenting families, regretted their decisions. Many expressed they would benefit from a follow-up opportunity to ask questions and clarify possible misunderstandings. Overall, while experiences varied, Australian families valued frank communication, trusted health professionals, were satisfied with the care their family member received and with donation processes, despite some apparent difficulties. Family satisfaction, infrequently assessed, is an important outcome and these findings may assist education for Australian organ donation professionals.

The development of a narrative describing the bereavement of families of potential organ donors: A systematic review

“…Many studies focus on support that assists with decision-making ( De Groot et al, 2012 ), while promoting family satisfaction is less prominent in training and assessment of outcomes ( Marck et al, 2016 ). Staff should adapt their actions to suit the family - creating opportunities for emotional expression when that is lacking, or sharing techniques (such as mindfulness) when emotions are excessive ( López Martínez et al, 2008 ; Perkins, 1987 ).…”

“…Although Ashkenazi and Cohen (2015) found that parents donating after DBD were more satisfied with the separation from their child than parents where the DCD pathway was followed, no differences were found in later adjustment ( Ashkenazi and Guttman, 2016 ). Marck et al (2016) feels that families consenting to DCD need to be well prepared for the short timeframes and possibility that organ donation may not proceed, in which case some are comforted when tissue donation is possible ( Marck et al, 2016 ; Walker and Sque, 2016 ).…”

“…The relationship between the values of the relatives and the preferences of the deceased should be explored. Where these factors are not aligned, confusion, disagreement, and later regret can be expected ( Anker, 2013 ; Marck et al, 2016 ; Mills and Koulouglioti, 2016 ; Northam, 2015 ), whereas moral counselling can lead to stable decisions ( De Groot et al, 2012 ).…”

“…Researchers found that most families are satisfied with their decisions ( Bartucci, 1987 ; Batten and Prottas, 1987 ; Greser et al, 2013 ; Kim et al, 2014 ; Marck et al, 2016 ; Redelmeier et al, 2014 ; Rodrigue et al, 2008a ; Tymstra et al, 1992 ; Walker and Sque, 2016 ; Walker et al, 2013 ), but have also noted that family well-being has only been superficially studied and little is known about long-term adjustment of families of potential organ donors ( Ashkenazi and Cohen, 2015 ; Bellali and Papadatou, 2006 ; Caplan, 1995 ; Riley and Coolican, 1999 ; Smudla et al, 2012 ).…”

“… Berntzen and Bjork (2014) argued that research on bereavement programmes was scarce and is required to improve quality of care for families ( Forsberg et al, 2014 ; Marck et al, 2016 ). While the donation agency has a responsibility to ensure that families have access to support, Jensen (2010) argues that consultation with families is vital because the organisation should not own the programme or structure it according to their assumptions while believing that families would agree with methods and terminology used.…”