RGU hopes to help parents deal with terminally ill child

North-east research could protect families with dying children from becoming embroiled in months-long legal battles.

A Robert Gordon University (RGU) project comes after a number of high-profile cases in England involving Charlie Gard, Alfie Evans and Archie Battersbee.

In April, 12-year-old Archie suffered brainstem death, and a lengthy legal challenge was lodged regarding his care.

He died in August after courts ruled it would be in his best interests to withdraw life support.

There’s never been a similar escalation of a case in Scotland.

And experts want to see if there are “dispute resolution” methods that could prevent this from ever happening.

The end-of-life research is being led by Dr Sarah Sivers, the academic strategic lead of RGU’s law school.

Funded by the NHS Grampian Endowment Fund, it also involves experts from Aberdeen University and Royal Aberdeen Children’s Hospital.

Over the next eight months they’ll speak to parents, carers and health workers who look after children with life-limiting conditions.

From there, they’ll determine the best options for such situations.

Dr Sivers said: “Tensions tend to arise in the tragic circumstance when a child’s medical condition has reached a point where there are no longer any treatment options capable of improving their condition, and where death is sadly inevitable.

“Families are, entirely understandably, desperate to look for any other possible option.

“However, healthcare professionals are faced with a situation where the only appropriate medical decision is to move to endof-life palliative care.”

If families and health boards can’t agree, the courts look at all aspects of a child’s interests to come to a decision.

Judges in some of these cases have explicitly called for mediation to try and resolve their disputes at an earlier stage.

Dr Sivers hopes the research can create a “local resource” to reduce the chances of a case needing court involvement.

She added: “We anticipate the research to have an impact on all those involved in decisionmaking about the care of children at such a difficult time.

“It will help families and healthcare staff during extremely challenging conversations throughout Scotland.”

And Professor Steve Turner, a consultant at Royal Aberdeen Children’s Hospital, said: “We’re sure (this) will benefit families and healthcare professionals both locally and further afield.”

“We’re sure this will benefit families and healthcare professionals

There can be few harder things to hear than that there is nothing left that doctors can do to stop your child from dying. However rational – and humane – such medical verdicts may appear objectively, it is easy to understand why some parents find them impossible to accept.

Over recent years we have seen this scenario play out in the public eye, as a number have pursued every legal avenue to block the end of treatment.

It has sharply divided opinion – but most would agree that finding a less painfully confrontational solution would be to everyone’s advantage.

Mediation is indeed something judges involved in such cases have said should have a bigger role.

Good news then that researchers here in the north-east have set out to establish a better path.

Their starting point is exactly the right one too: conversations with people who already find themselves at the sharp end of such tragic dilemmas.

We wish them every success in this valuable endeavour.

Picture by Paul Glendell. EMOTIVE: Dr Sarah Sivers hopes her research can help parents let go when a child is dying.