Parents must have a say in end-of-life care cases for children where they disagree with medical professionals, review recommends

Guidance should be developed to ensure that parents’ views are taken into account and families should be adequately notified of legal action in cases where they disagree with medical professionals caring for seriously ill children, it recommends. a review.

The Nuffield Bioethics Council (NCOB), which was asked in December to lead a government-commissioned review, said the Department of Health and Social Care (DHSC) should set up a working group to implement its suggestions, which They are intended to help alleviate “distressing” situations.

The review, published on Monday and containing 16 recommendations, came in the wake of high-profile court cases involving the families of Charlie Gard and Archie Battersbee, which ended in separate legal disputes with the NHS trusts looking after the children. .

Archie died aged 12 in August 2022 after being taken off life support at the Royal London Hospital, in the east of the capital.

His parents took their fight for him to continue treatment, and later for him to be moved to a hospice, before the Supreme Court and the European Court of Human Rights.

Charlie died aged 11 months in July 2017 after his parents lost their fight to have him moved from Great Ormond Street Hospital in central London for treatment elsewhere. The Charlie Gard Foundation, a charity set up after his death, was one of the contributors to the review’s call for evidence.

Currently, the parents of seriously ill six-month-old Indi Gregory are embroiled in a High Court fight for life-sustaining treatment.

The baby has mitochondrial disease, a genetic condition that depletes energy from the body’s cells, and her parents want her to continue treatment.

But a lawyer for Nottingham University Hospitals NHS Foundation Trust bosses said they are asking the court to decide whether life-sustaining treatment should continue “because Indi’s parents and those treating her cannot agree”.

Those behind the overall review said they hope that, if properly implemented, their recommendations can “make a real, positive difference to families and healthcare professionals who find themselves in these nightmarish situations.”

The NCOB said it had looked at disagreements over the care of children under 16, including babies, in England, and had heard from parents of critically ill children and health professionals in hospitals across the country.

Charlie Gard (pictured with his parents) died aged 11 months in July 2017 after his parents lost their fight to have him moved from Great Ormond Street Hospital in central London for treatment elsewhere.

Among the recommendations, it said NHS trusts in England should inform families within three calendar days of a decision to start court proceedings to give them sufficient time to obtain legal advice, and that the Youth Court Advisory Service and Families (CAFCASS) should provide and promote information to parents about the role of the guardian of children in court proceedings regarding the medical treatment of children.

The review also said there should be guidance for clinical ethics committees (CECs) in England on how to ensure that the views of parents and, “where appropriate, children are taken into account in CEC discussions and that parents receive support to provide input to CEC meetings. .

He said the DHSC should establish a working group ‘to oversee the implementation of the recommendations of this report to facilitate collaboration; promote the filling of current evidence gaps and ensure that mechanisms are in place to achieve lasting change.”

The review also urged NHS England to bring together resources to help families navigate healthcare systems, including how to seek second opinions and raise concerns.

Natalie Michaux, NCOB research and policy manager, led the work conducted during the independent review.

She said: ‘The unique insights we have gathered throughout this review have helped us identify when and why disagreements arise and, most importantly, what needs to change to help people better cope with these difficult situations.

‘We are so grateful to everyone who spoke to us and shared their experiences so honestly. One thing our review makes very clear is that there is no one-size-fits-all approach we can take to make things better for everyone.

‘Every person is unique, every disease is different and as such, each case requires its own approach.

Currently, the parents of seriously ill six-month-old Indi Gregory are embroiled in a High Court fight for life-sustaining treatment.

“If properly followed, the recommendations in this review will make a real, positive difference to families and healthcare professionals who find themselves in these nightmarish situations.”

Steph Nimmo, whose 12-year-old daughter died, contributed to the review and said the recommendations could help “ensure that parents and professionals caring for the most medically complex children in this country are supported and heard.”

She said: “Raising a critically ill child is an unparalleled journey through uncharted territory, where every decision seems like an impossible choice.”

‘When my newborn daughter was diagnosed with a rare, life-limiting disease, I found myself thrown into this world, learning to be her advocate, faced with unimaginable decisions.

‘In the years since his death at the age of 12, I have dedicated my free time to understanding the tipping points that can lead to disagreements and conflicts between parents and their child’s medical team.

“As today’s report clearly demonstrates, good communication practices and practical and emotional support – for everyone involved – are essential to achieving lasting change.”