Who should decide: Parents or doctors on withholding treatment for disabled neonates/young children?

Challenging! For ethical, emotional, societal, juridical and economical parameters are involved. So, involvement of a multidisciplinary team is required for decision making? In practice doctors together with the parents sometimes have to decide by lack of time to discuss the best outcome.

There are too many variables to have a uniform answer. In practice it is usually Doctors who decide with the consent of parents. This does not necessarily make the decision ethical. There is clearly a difference between withholding care when teh care is would be truly extraordinary and and futile for preserving the life of the infant versus withholding care that would be routine for a viable infant based on a subjective notion that the infant's future quality of life would not worthy of saving. Many decisions to withhold care fall into the second category, and in my view are no more or less defensible than letting babies die because they are socially or economically disadvantaged. While these two extreme categories exist, in reality many cases fall somewhere between the two. What happens in many cases is that the physician discusses it with families, but the in most cases the physician already has made up his or her mind one way or the other (and that usually means on the side of withdrawing care because physicians don't usually raise this question for babies they consider worth saving). Consciously or unconsciously, the physician presents the case biased toward withholding care and the family in most cases agrees. Thus it appears that the family has made the decision but this is a kind of illusion. In cases where families refuse the option of withholding care, one of three things happens: (1) Care is reluctantly provided, (2) the case goes to an ethics committee or court for a decision, or (3) care is withdrawn anyway or given with poor quality to create a situation in which it becomes impossible to preserve life.

It is quite difficult to answer on this question as there are many ethical dilemmas about it. There should be a consensus as parents usually have no knowledge in medicine but they are not child's parents. In case of disaccord Child Protection Services should be included.

Hi - late answer, I know, but in case you are still interested in this issue, there was a recent case that might be of interest to you in the UK called F v F (MMR Vaccine).   I wrote on this and have uploaded a publication on it (also if you google it you'll find a link to the BBC coverage of the case and an overview of the general issues in law).