A review into the disputes that can arise between families and medics in the care of critically ill children will be led by the Nuffield Council on Bioethics, it has been announced.
The Government-commissioned review comes in the wake of high profile court cases, including between the families of Charlie Gard and Archie Battersbee and the NHS trusts caring for their boys.
Archie died in August after his life support was turned off at the Royal London hospital in east London.
His parents had taken their fight for ongoing treatment, and subsequently for him to be moved to a hospice, to the Supreme Court and the European Court of Human Rights.
Charlie died in July 2017, after his parents lost their fight to have him transferred from Great Ormond Street hospital in central London for treatment elsewhere.
In September, Tory peer Lord Kamall told the House of Lords the new review would examine all the issues and will “attach no blame”.
He said: “We want to hear from as many people as possible. It will investigate the causes of disagreements in the cases of critically ill children between providers of care and persons with parental responsibility.
“It will look at whether and how these disagreements can be avoided, how we can sensitively handle their resolution, provide strong evidence and inform future recommendations to support end-of-life healthcare environments in the NHS.
“As much as possible, it will promote collaborative relationships between families, carers and healthcare.
“We can see it from both sides – as a parent, just put yourself in the shoes of someone who has to make these difficult decisions.
Sometimes they feel that the medical profession acts like God. On the other side, there are medical professionals who believe that the parents do not really understand all the details. Let us make sure that we get this right— Lord Kamall
“Sometimes they feel that the medical profession acts like God. On the other side, there are medical professionals who believe that the parents do not really understand all the details. Let us make sure that we get this right.”
The review, which will look at the care of children in England, will examine the views of families and healthcare teams but will also look at the ethics of decision-making and current research.
The Nuffield Council on Bioethics said its findings will cover the causes of disagreements between healthcare professionals and parents or carers; the ethical issues these raise; recommendations for national or regional level interventions to help avoid such disagreements or resolve them more quickly in future; and the identification of any gaps in current evidence.
Health and Social Care Secretary, Steve Barclay, said: “I recognise the extraordinary burden on parents and medical professionals when making decisions on what medical treatment is in the best interest of a critically ill child.
“Every effort should be made for families and healthcare teams to reach agreement and I have commissioned the Nuffield Council on Bioethics – an independent body with experience in handling complex ethical and medical issues – to explore how best to achieve this.
“I am committed to making sure the views of families, carers and clinicians are at the centre of this review designed to make the decision-making process clearer during the most difficult of times.”
Danielle Hamm, director of the Nuffield Council on Bioethics, said she hoped the review will “lead to better support for families and healthcare professionals facing these very distressing situations to work through disagreements sensitively and collaboratively, and to resolve matters as quickly and fairly as possible so that all involved feel like their voices have been heard”.
