New study offers insight on how to support parents with end-of-life care decisions

One of the most challenging conversations for parents and doctors on the neonatal unit is about limiting life-support and moving to end-of-life care for a critically sick baby.

A new study published in Archives of Diseases in Childhood Fetal and Neonatal Edition set out to understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments by recording and analysing formal conversations between neonatal consultants and families. The findings showed that doctors adopted three distinct styles of communication:

1. ‘recommendations’ - in which one course of action is presented and endorsed as the best course of action, eg we should change his active intensive care into palliative care

2. ‘single-option choice’ - referring to a single choice without listing other options, eg should she deteriorate, would you want resuscitation?

3. ‘options’ - where the doctor explicitly refers to or lists options, eg the options are that we would offer palliative care, which is just comfort and support, or we would offer intensive care.

Each approach had a different impact on parents’ involvement in decision-making and when given options – not recommendations – parents engaged more strongly, were more likely to express their preferences, and could ask questions without challenging the doctor. The researchers conclude that encouraging different approaches to conversations about limitation of life-supporting treatment may lead to better parent engagement, which could affect their ability to cope later if their baby died or was left with a severe medical condition.

National Institute for Health and Care Excellence guidelines advise doctors to make decisions in partnership with parents but doctors frequently feel ill-prepared for these discussions. This study could help guide clinicians on how to communicate sensitively and work with parents to make these difficult end-of-life decisions.

Reference

Marlow N, et al. End-of-life decisions in neonatal care: a conversation analytical study. Arch Dis Child Fetal Neonatal Ed 2021;106:184-88. https://fn.bmj.com/content/106/2/184