Will this be a life worth living

Is a life worth living?

“…One important factor omitted from your otherwise excellent editorial 1 and associated report 2 and review 3 of the ethics of long-term ventilation of infants with spinal muscular atrophy is that death at 1-2 years of age is not accompanied by the patient's comprehension of dying. Dying in infancy is likely to be much less distressing for the patient than when dying is accompanied by awareness later in life.…”

Medical impasse: A problem as big as Texas?

“…The situation is even trickier now, as she is of primary school age and 'more of a person with her own life, wishes and experiences'. 1,2 This case has been presented previously, and the parents and medical team have had diametrically opposed views that could rightly now be considered entrenched. 3 This is a medical impasse, but interestingly, no mention is made of consultation from a clinical ethics group.…”

“…Isaacs and Kilham argue for a legal decision, accepting that the decision may not be 'right' but the decisionmaking impartial. 2 Children's hospitals are usually reluctant to go to court because of concern about negative public opinion. This can leave the best interest of this child behind.…”

Ethics of paediatric end-of-life decision making and consent for publication

“…The acting editor of the journal to which we submitted the paper consequently required parental permission before publication. We were able to obtain such permission and the paper was published,6 with an accompanying editorial 7. Parental consent for publication remains a highly debatable issue in paediatrics.…”