Perceived role in end-of-life decision making in the NICU affects long-term parental grief response

Abstract

In decisions to forego life-sustaining treatment in the NICU, the perception of a shared decision is associated in the long term with lower grief scores than perceptions of the other types of DM.

Talking With Parents About End-of-Life Decisions for Their Children

“…10,12,[21][22][23]26,27,31,[36][37][38] Our findings indicate that in actual conversations parents act in line with this preference. Most parents in our study made an effort to actively participate in the decision-making process, especially when their initial preferences regarding the course of treatment did not correspond with those of the medical team.…”

“…2,3,5,9,11,[16][17][18][19][20] Parents' perception of a shared approach may even lower their grief in the long term. 21 The extent to which parents want to share in the decision-making process differs from parent to parent. Some want to share in all stages of the decisionmaking process, including exchanging information, deliberating about preferred options, and making the final decision together (Table 1).…”

Neonatal End-of-Life Care: A Single-Center NICU Experience in Israel Over a Decade

“…The involvement of parents in the end-of-life decision-making process also has a favorable impact on long-term parental grief. 34 Cultural context may influence the preferred type of involvement, varying from physicians largely making the decisions as in Latin America, 30 to decisions made mostly by parents as in Quebec, Canada. 35 Because of the retrospective nature of this study, it was difficult to measure accurately the relationship between the type of care given and the cultural and religious background of the families.…”

Death, bereavement and randomised controlled trials (BRACELET): a methodological study of policy and practice in neonatal and paediatric intensive care trials

“…A number of studies have examined parental experiences of bereavement in the neonatal period and these suggest that sensitivity shapes the way that research is carried out but does not necessarily constitute an insurmountable obstacle to research. 26,28,[159][160][161] The sensitivities that might be associated with the topic considered in BRACELET, however, extend beyond, and possibly heighten, those linked with bereavement per se. Interviews for this study would involve exploration of additional dimensions of parental experiences, such as decision-making about research participation and exposure of a baby to research risks, and for some parents could include discussion of the potential of a trial to change outcomes for a child.…”