Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study

Abstract

Background: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. Aim: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant. Design: Qualitative study using face-to-face semi-structured interviews. Setting/participants: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018. Results: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist. Conclusions: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.

End-of-Life Care Planning in Diverse Individuals Across Age Groups

“…Studies in diverse populations by seeking research across populations with different ages, rural and urban settings, and countries beyond the United States were selected. 10,[16][17][18][19][20][21]…”

“…Two studies14,15 were combined in our report as they came from a single research project (see Supplemental Digital Content Table 1, available at: http://links.lww.com/JNCQ/B93). Studies in diverse populations by seeking research across populations with different ages, rural and urban settings, and countries beyond the United States were selected 10,16–21…”

Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision‐making

“…Quality of life is also a parental concern. Another Belgian study found that poor prognoses were relevant for parents' end‐of‐life decisions 10 . This means that, although GA thresholds might lead to a self‐fulfilling prophecy, they are still justifiable if they are based on the willingness to promote quality of life and parental autonomy.…”

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

“…It is characterized by a reciprocal exchange of information between HCPs and parents and emphasizes the importance of eliciting parental values, goals, and decision-making preferences, e.g., the desired degree of decisional responsibility or amount and type of information [ 15 ]. Making shared treatment decisions has shown to be inherently connected to the communication process and as such enhanced by high-quality and compassionate communication [ 8 , 22 ].…”