Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families, as well as for some staff. However, not infrequently the authors have found religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people. While it is vital to support families in such challenging times, the authors are increasingly concerned that deeply held belief in religion, especially with more fundamentalist religions, leads to children being subjected to burdensome care in expectation of 'miraculous' intervention.
Remember Baby Joseph?
The London hospital he was treated at did not want to perform a tracheotomy out of concern that it would "burden" him and cause him suffering.
He finally got his tracheotomy in the U.S. and died at home surrounded by his parents.
These authors may or may not have eugenicist intentions, but people who do support eugenics will springboard off this concern for the children to be able to cut off "useless eaters".
The authors reviewed cases involving end-of-life decisions over a 3-year period on the intensive care unit during which they had recourse to the Great Ormond Street Hospital for Children NHS Trust's clinical ethics service, as neither extended discussions with medical teams nor local support mechanisms lead to resolution. There were 17 referrals of which 11 (65%) involved direct religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with the conviction that overly pessimistic medical predictions were wrong. Of the distribution of the religions: five were fundamentalist Protestant groups, three Muslim, two Jewish and one Roman Catholic. Five of the 11 cases were resolved after meeting with out-of-hospital religious community leaders; one child had intensive care withdrawn following a High Court order and, in the remaining five, all Christian fundamentalists, no resolution was possible due to expressed expectations that a 'miracle' would happen for the specific child in question, so treatment must continue.
And how did the affected children feel about this? Did they want to continue or not?
J Med Ethics. 2012 Mar 30. [Epub ahead of print]
Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?
Brierley J, Linthicum J, Petros A.
Paediatric and Neonatal Intensive Care Unit, Great Ormond Street Hospital for Children, London, UK.