Parents' experience of the decision to withdraw treatment from their critically ill baby

The legal and ethical issues around withdrawing life sustaining treatment were played out publicly in the cases of Charlie Gard and Alfie Evans. As the parents and medical teams reached an impasse over their treatment, the courts were left to decide their fate. The cases evoked much debate about the role of parents in these decisions and the weight that should be attached to their views. The key aim of this study was to understand the experience of parents who were involved in decisions to withdraw life sustaining treatment from their baby. It was also to comprehend what made a ‘good’ experience from their perspective and provide an opportunity to offer recommendations for enhanced communication between parents and medical professionals, which may help avoid future recourse to the courts.

Eight parents who had been involved in decisions of this nature were recruited through the charities, Bliss and Sands and were interviewed for approximately one hour. During the interviews, parents talked about what made their decision easier or harder.

Some of the issues raised by parents were in relation to communication, parental involvement and how these helped them to understand the situation they were facing. Some parents also discussed factors that reassured them that the right decision was being made, such as seeing their baby in distress or being given adequate time to process the preceding events. Underpinning this were the medical team, and the significance of their role in shaping the experience of parents was sometimes stark. Whilst some were very clear about their positive experiences in terms of how they felt supported, the account of others has served to highlight both the challenges here and areas for reflection. From their perspective, a medical team that engaged in open and honest communication, helped them to feel well informed, involved, and have a better understanding about their baby’s prognosis. This in turn helped build trust with the team and more adequately supported them through the decision-making process. Poor communication that didn’t meet these descriptors was found to be detrimental and resulted in feelings of suspicion and doubt around the final decision.