Perspectives on periviability counselling and decision‐making differed between neonatologists in the United States and the Netherlands

Aim

American guidelines suggest that neonatal resuscitation be considered at 23 weeks of gestation, one week earlier than in the Netherlands, but how counselling practices differ at the threshold of viability is unknown. This pilot study compared prenatal periviability counselling in the two countries.

Methods

In 2013, a cross‐sectional survey was sent to 121 Dutch neonatologists as part of a nationwide evaluation of prenatal counselling. In this pilot study, the same survey was sent to a convenience sample of 31 American neonatologists in 2014. The results were used to compare the organisation, content and decision‐making processes in prenatal counselling at 24 weeks of gestation between the two countries.

Results

The survey was completed by 17 (55%) American and 77 (64%) Dutch neonatologists. American neonatologists preferred to meet with parents more frequently, for longer periods of time, and to discuss more intensive care topics, including long‐term complications, than Dutch neonatologists. Neonatologists from both countries preferred shared decision‐making when deciding whether to initiate intensive care.

Conclusion

Neonatologists in the United States and the Netherlands differed in their approach to prenatal counselling at 24 weeks of gestation. Cross‐cultural differences may play a role.

     

Behavioral economics—A framework for donor organ decision‐making in pediatric heart transplantation

The high discard rate of pediatric donor hearts presents a major challenge for children awaiting heart transplantation. Recent literature identifies several factors that contribute to the disparities in pediatric donor heart usage, including regulatory oversight, the absence of guidelines on pediatric donor heart acceptance, and variation among transplant programs. However, a likely additional contributor to this issue are the behavioral factors influencing transplant team decisions in donor offer scenarios, a topic that has not yet been studied in detail. Behavioral economics and decision psychology provide an excellent foundation for investigating decision‐making in the pediatric transplant setting, offering key insights into the behavior of transplant professionals. We conducted a systematic review of published literature in pediatric heart transplant related to behavioral economics and the psychology of decision‐making. In this review, we draw on paradigms from these two domains in order to examine how existing aspects of the transplant environment, including regulatory oversight, programmatic variation, and allocation systems, may precipitate potential biases surrounding donor offer decisions. Recognizing how human decision behavior influences donor acceptance is a first step toward improving utilization of potentially viable pediatric donor hearts.     

Fast and slow thinking; and the problem of conflating clinical reasoning and ethical deliberation in acute decision‐making

Expertise in a medical specialty requires countless hours of learning and practice and a combination of neural plasticity and contextual case experience resulting in advanced gestalt clinical reasoning. This holistic thinking assimilates complex segmented information and is advantageous for timely clinical decision‐making in the emergency department and paediatric or neonatal intensive care units. However, the same agile reasoning that is essential acutely may be at odds with the slow deliberative thought required for ethical reasoning and weighing the probability of patient morbidity. Recent studies suggest that inadequate ethical decision‐making results in increased morbidity for patients and that clinical ethics consultation may reduce the inappropriate use of life‐sustaining treatment. Behavioural psychology research suggests there are two systems of thinking – fast and slow – that control our thoughts and therefore our actions. The problem for experienced clinicians is that fast thinking, which is instinctual and reflexive, is particularly vulnerable to experiential biases or assumptions. While it has significant utility for clinical reasoning when timely life and death decisions are crucial, I contend it may simultaneously undermine the deliberative slow thought required for ethical reasoning to determine appropriate therapeutic interventions that reduce future patient morbidity. Whilst health‐care providers generally make excellent therapeutic choices leading to good outcomes, a type of substitutive thinking that conflates clinical reasoning and ethical deliberation in acute decision‐making may impinge on therapeutic relationships, have adverse effects on patient outcomes and inflict lifelong burdens on some children and their families.     

Valid informed consent and participative decision‐making in children with cancer and their parents: A report of the SIOP working committee on psychosocial issues in pediatric oncology

This is the tenth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, instituted in 1991. It is addressed to the pediatric oncology community. Children clearly have a right to participate in medical decisions regarding their own treatment, based on the developmental level of the child. The objective of these guidelines is to encourage physicians to share with the child developmentally relevant medical information specific to that particular child's health status, in the context of the child's own culture, so that he or she can actively participate in the decision‐making process regarding his or her own health. These guidelines, geared toward this objective, discuss the child's right to medical information, the parents' legal responsibility for but not exclusive right over the child's health, and ways of encouraging the younger child's active participation in his or her own health care at an age‐appropriate level of understanding. For adolescents, there should be a full and legally mandated power to make their own decisions regarding medical treatment. Med Pediatr Oncol 2003;40:244–246. © 2003 Wiley‐Liss, Inc.     

Patients and their family members prioritize post‐transplant survival over waitlist survival when considering donor hearts for transplantation

Heart transplant providers often focus on post‐transplant outcomes when making donor decisions, potentially at the expense of higher waitlist mortality. This study aimed to assess public opinion regarding the selection of donor hearts and the balance between pre‐ and post‐transplant risk. The authors generated a survey to investigate public opinion regarding donor acceptance. The survey was shared freely online across social media platforms in April‐May 2019. A total of 718 individuals responded to the survey, with an equal distribution between patients and family members. Respondents consistently favored post‐transplant outcomes over waitlist outcomes. About 83.9% of respondents favored a hospital with longer waitlist times, worse waitlist outcomes, but excellent post‐transplant survival over a hospital with short waitlist times, a high waitlist survival, and inferior post‐transplant survival. This preference was no different between pediatric and adult populations (P = .7), patient and family members (P = .935), or those with a pre‐ vs post‐transplant perspective (P = .985). Patients and their family members consistently favor improved post‐transplant survival over waitlist survival when considering the risks of accepting a donor organ. These findings suggest that current practice patterns of donor selection align with the opinions of patients and family members with heart failure or who have undergone heart transplantation.     

A qualitative study exploring infant feeding decision‐making between birth and 6 months among HIV‐positive mothers

Despite efforts to support breastfeeding for HIV‐positive mothers in South Africa, being HIV‐positive remains a barrier to initiating and sustaining breastfeeding. The aim was to explore decision‐making about infant feeding practices among HIV‐positive mothers in a rural and urban settings in KwaZulu‐Natal, South Africa. HIV‐positive pregnant women were purposively sampled from one antenatal clinic in each setting. A qualitative longitudinal cohort design was employed, with monthly in‐depth interviews conducted over 6 months postdelivery. Data were analysed using framework analysis. We report findings from 11 HIV‐positive women within a larger cohort. Participants were aged between 15 and 41 years and were all on antiretroviral therapy. Before delivery, nine mothers intended to exclusively breastfeed (EBF) for 6 months, and two intended to exclusively formula feed (EFF). Three mothers successfully EBF for 6 months, whereas four had stopped breastfeeding, and two were mixed breastfeeding by 6 months. Mothers reported receiving strong advice from health workers (HWs) to EBF and made decisions based primarily on HWs advice, resisting contrary pressure from family or friends. The main motivation for EBF was to protect the child from HIV acquisition, but sometimes fear of mixed feeding led to mothers stopping breastfeeding entirely. Infant feeding messages from HWs advice were frequently inadequate and out of date, and failed to address mothers' challenges. Minimal support was provided for EFF. In conclusion, HWs play a pivotal role in providing infant feeding support to HIV infected mothers, but need regular updates to ensure if advice is correct and appropriate.