Parents: Courts shouldn’t decide fate of critically ill babies

Eight out of ten parents do not think the courts should intervene when deciding whether to withdraw treatment from a critically ill baby according to a mumsnet.com survey commissioned by the GMC.

8 out of 10 (1) parents do not think the courts should intervene when deciding whether to withdraw treatment from a critically ill baby according to a mumsnet.com survey commissioned by the General Medical Council.

Of those surveyed, when it comes to withdrawing treatment for critically ill babies

• over half of those questioned (55%) feel parents should have the final say
• only one in four (25%) felt the healthcare team should make the decision.

Currently, the law states that if doctors and parents disagree on whether to withdraw treatment, a court must decide.

The findings come as the GMC drafts new guidelines for doctors treating critically ill babies as part of a wider public consultation into End of Life Treatment and Care: Good Practice in Decision-Making.

GMC Assistant Director of Standards, Jane O’ Brien said; “Having a critically ill baby is every parent’s worst nightmare. So it’s vital that doctors and the healthcare team work closely with parents at this emotionally fraught time.

“The ideal situation is that the doctor and parents make a decision together that is based on the best interests of the child. Parents getting the right information at the right time is crucial to this and will minimise the chances of these decisions ever reaching the courts.

“GMC guidance is always consistent with the law and within that framework our guidance on End of Life Treatment and Care can help doctors to support parents and give them information in the right ways at the right times. This will help parents deal with difficult decisions including changing the focus of treatment to managing symptoms and providing comfort."

Anyone can take part in the consultation by going to http www.gmc-uk.org/index.asp

Mumsnet co-founder Carrie Longton said; “Tragically quite a number of Mumsnetters have first hand experience of this heartbreaking subject says. We are delighted though that the GMC has chosen to consult with parents via Mumsnet and that the voices of parents will be heard when the medical profession drafts these important guidelines.”

Bliss Chief Executive Andy Cole said, “We are delighted to have been part of the group that worked on these new GMC guidelines. Each year in the UK 22,000 babies are admitted to neonatal intensive care and it is a very unfortunate reality that some of their families will be faced with the extremely difficult decision to withdraw active treatment. The role of healthcare professionals is an incredibly important one in helping parents to make this decision at what is already a very stressful time.”

As well as looking at the care of critically ill neonates, “End of life treatment and care: good practice in decision making” seeks to help doctors provide good care for all patients who are at the end of their lives. The consultation asks for views on several areas including:

• Cardiopulmonary resuscitation (CPR) – The draft guidance includes advice on when discussions about CPR are appropriate and how to approach these difficult conversations with patients, their families and carers.   
• Clinically assisted nutrition and hydration – The draft guidance includes more information about the clinical complexities and takes account of the special status that clinically assisted nutrition and hydration has for many people.
• Advance care planning – the draft guidance includes more detail on palliative care, including: how doctors should deal with requests and refusals for life prolonging treatment; and how to approach discussions about future care with patients and their families including advance requests or refusals of treatment.
• Care after death and organ donation – A new section in the draft guidance covers a range of issues, including: taking account of cultural and religious considerations; dignity and respect for the body; responsibilities towards families, carers and others close to the patient; and when it might be appropriate to discuss organ donation with patients or their families.