Removal of life-sustaining care “too rushed and fraught with injustices”

Changes are needed to ensure the voices of families are respected in the case of critically children whose life support may be withdrawn, calling the process “too rushed and fraught with injustices”.

Responding to the Nuffield Council on Bioethics review, Christian Concern called for nine changes to the process to help families’ voices be heard from the outset.

In response to high profile cases including Archie Battersbee, the government commissioned the Nuffield Council on Bioethics to conduct an independent review of what happens when there are disagreements in the care of critically ill children. Members of the Christian Concern legal team have met with the council to discuss the review at Nuffield Council’s invitation.

Better process for family members

The reforms recommended by Christian Concern include mandatory mediation, mandatory approval by the Ethics Committee and adequate notice to the family, all of which would help avoid protracted and painful legal battles.

They also include rights to legal aid, to instruct medical experts and to choose alternative providers of treatment, which would redress the sizeable imbalance of power between families facing distressing circumstances and taxpayer-funded hospitals.

Failure of justice

Christian Concern and the Christian Legal Centre have extensive experience of supporting families as they navigate the legal system, fighting for the continued treatment of critically ill children.

This includes the families of Archie Battersbee in 2022, Zainab Abbasi in 2019 and Alfie Evans in 2018. The Christian Legal Centre has also supported family members of ‘RS’, a middle-aged adult whose nutrition and hydration was withdrawn.

In all too many of these cases, critical decisions are made very early in the process when the family has not been adequately consulted or notified and has been unable to secure proper legal support. This is a failure of justice as early legal decisions are relied on by higher courts and the child’s changing condition not adequately recognised.

On Monday 5 June, Hollie Dance, mother of Archie Battersbee, gave evidence in person, explaining her experience. In particular, she has criticised the decision to refuse to let the family “take Archie to a hospice where he would have had a much more calm and peaceful environment.”

Right to accept alternative offer of treatment

Christian Concern’s submission points out that in other cases, such as Alfie Evans, the parents were refused permission to accept an offer of continued treatment at no expense to the NHS. It says “The parents should have the right to seek an alternative provider of treatment or care. Once this right has been exercised, the previous clinical team should immediately lose standing to pursue its legal application.”

Chief executive Andrea Williams commented:

“We have stood with these families for some of the hardest weeks and months of their lives. We continue to stand with them.

“We need a system where parents are truly involved, where they don’t have to fight a system against all the odds, where medical evidence can be introduced as the timeline continues, rather than relying on decisions made right at the beginning – so that we don’t weaken laws around the end of life, but also so that we don’t become the arbiters of when death should occur.

“Hospitals should give parents time rather than rushing into court proceedings. Parents’ wishes should be listened to. ‘Dignity’ should not be synonymous with dying and ‘best interests’ should be assessed in line with the patient and family’s beliefs rather than utilitarian ideology.

“We want to see more chances for children to overcome the odds like Tafida Raqeeb.”