As many have pointed out, difficult topic, and always one that has the ability to polarize people.
Whilst the article provides a very sad story, it obviously does not give both sides. Without knowing the full picture it is difficult to comment on the right or wrongs. It is understandable for any parent to not want to give up on their children, and something I wish no one had to go through. It is also natural and expected human emotion to look for blame in cases such as this one, or as another example when a child develops Autism. Unfortunately due the emotions involved the blame is often misdirected.
Whilst I do have to make decisions on withdrawing treatment from patients, I am so glad that this only ever very rarely involves children. When the decision does involve children it is usually in the context of a resuscitation attempt, and for those involved it is usually easier to justify that they had tried everything possible. It would undoubtedly be a much more difficult decision if you had time to sit and think about your choices, and discuss them with those affected – such as facing a smiling child with a terrible illness, and her parents. I don’t know of any doctor who would not have difficulties with these decisions. To be honest this is one of the most common areas where doctors get things wrong and offer hope where there is none, due to weight of expectation. A decision such as this would be made by a team of people and not by a single doctor, to help ensure the correct choice. It would be unusual for any decision to be based on any one factor such as mental retardation. Without focusing on the individual child in this case, the disease mentioned causes a spectrum of other problems, many of which I would imagine would seriously affect her ability to receive and survive a renal transplant.
It is unfortunate that the words that were read on the doctors notes, however it must be remembered that these were likely written in the context of the decision making process, and probably not intended for the family to read. Terminology such as “mental retardation”, whilst considered to have a modern derogative meaning, are in essence medical terms that are not intended to insult or belittle. Words such as this are needed to describe very real things, for example morbid obesity, alcoholism or death. If one was shy away from correctly using a word or discussing a subject simply due to fear of causing insult they would be doing their patients a disservice.