After an end‐of‐life decision: Parents' reflections on living with an end‐of‐life decision for their child

Abstract

Parents' role as end-of-life decision-makers for their child has become largely accepted Western healthcare practice. How parents subsequently view and live with the end-of-life decision they made has not been extensively examined.To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. MethodsA qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed end-of-life decisions for their child who had a life-limiting condition and had died. Data were thematically analysed. ResultsTwenty-five bereaved parents participated. Results indicate that parents hold multi-facetted views about their decision-making experiences. An end-of-life decision was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents'comments demonstrated being able to live with their decision.

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement

“…The question we asked the parents, namely their degree of approval of a decision already made by the medical team, reflects the preferential choice of our team that parents participate in the decision without being directly responsible for it, which appears as intermediate between a paternalistic approach and a shared decision [ 40 ]. In reality, however, some parents during the 3-month interview reported having been the main actors in the decision-making process, using the words “we were asked to decide.” A recent qualitative study underlined that most parents could “well live” with the decision they made for their child [ 44 ]. The results of our work also suggest that the parental perception of having explicitly agreed to the decision, or even of having been an actor in the decision, can change over time.…”

The parental role before and after SIDS

“…"Parental vulnerability," helplessness due to the inability to protect one's child from harm that propels the parent to "re-defining parenthood" (Nuss, 2014), was noted to be especially acute among participants. Importantly, the sense of control and parental self-efficacy described in parents caring for their children through terminal illness (Sullivan et al, 2020) were unavailable to them.…”

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

“…44,49 Parents who thought they were coerced into decision-making felt anger, bitterness and distress and they described their experience as horrific and painful. 44,49,62,63 Difficulty grasping the reality. Parents struggled with the reality of the situation when they were making decisions.…”

“…36,38,45,48,50,52,53,56,60 Parents firmly believe in their responsibility to make decisions which include choices related to treatment and life support. 39,45,49,56,58,62 There was also evidence of child involvement, either through verbal expression of their wishes or nonverbal signs that indicate their desire to continue living. 38,48,49,61,63 Parents saw themselves as experts on their children and, in situations in which they felt like they were not getting enough support from doctors, they had a strong need to protect the child.…”