RELIGIOUS parents of seriously ill children who expect
miraculous intervention are challenging the withdrawal of therapies
that medical professionals consider to be "aggressive", "futile and
burdensome", a paper published in the current issue of the
Journal of Medical Ethics suggests.
The authors of the article - "Should religious beliefs be
allowed to stonewall a secular approach to withdrawing and
witholding treatment in children?"- argue that, in place of
protracted dialogue between parents and professionals, during which
a child might be subject to pain and discomfort, it would be better
to have a "default position" whereby the case is taken to
Dr Joe Brierley and Dr Andy Petros, both consultants at the
Paediatric and Neonatal Intensive Care Unit at Great Ormond Street
Hospital for Children, and the chaplain of the hospital, the Revd
Jim Linthicum, reviewed 203 cases at the unit over a three-year
period, where withdrawal or limitation of invasive care was
recommended by the medical team.
While in the majority of cases parents agreed to withdrawal or
limitation, in 17 cases "extended discussions" between parents and
medical teams did not lead to a resolution. Of these, 11 involved
"explicit religious claims that intensive care should not be
stopped due to the expectation of divine intervention and complete
cure together with the conviction that overly pessimistic medical
predictions were wrong".
Of the 11 cases, five - involving Muslim, Jewish, and Roman
Catholic parents - were resolved after meeting religious leaders;
one child had intensive care withdrawn after a High Court Order;
and in the remaining five, all involving Christian parents, most
from "Christian fundamentalist churches with African evangelical
origins", no resolution was possible, owing to "expressed
expectations that a 'miracle' would happen".
The authors report that the Christian parents who "held fervent
or fundamentalist views" did not engage in exploration of their
religious beliefs with hospital chaplains, and that no religious
community leaders were available to attend discussions.
Of the total number of 17 cases where there difficulties with
finding a resolution, 14 of the children died soon after intensive
care was withdrawn; one died within a week of withdrawal; and two
survived with "profound residual neurodisability".
While the authors acknowledge that it is "completely
understandable" that some parents oppose withdrawal of support,
they call for a "different approach", citing "considerable stress,
tension and conflict" for parents and staff.
The paper argues that while "any solution should allow due
deference to a family's beliefs and shared involvement in
decision-making", the religion of parents "should not influence the
management of their child". It cites the example of giving the
children of Jehovah Witnesses blood transfusions and also Article 3
of the Human Rights Act, which states that "no one shall be
subjected to torture or to inhumane or degrading treatment or
The argument of the paper is challenged in four commentaries
also published in the Journal of Medical Ethics. They were
commissioned by the journal, and appear alongside the article.
Professor Julian Savulescu, the journal's editor, argues that:
"Treatment limitation decisions are best made, not in the alleged
interests of patients, but on distributive justice grounds."
He suggests that, while it is difficult to say when a human
being's life is worse than death for that individual, "it is much
more tractable to decide when one life is better than another and
when one life is more worth saving." In a publicly funded system
with limited resources, these should be given to those whose lives
could be saved rather than to those who are very unlikely to
survive, he argues.
Dr Steve Clarke of the Institute for Science and Ethics argues
that the comparison with Jehovah's Witnesses opposing blood
tranfusions does not stand up: belief in miracles is widespread,
and opposing withdrawal of treatment in the hope of a miracle
cannot be said to be against a child's best interests. He cites
"significant scholarly arguments for the conclusion that miracles
are possible", and suggests that doctors should engage with devout
parents on their own terms.
"Devout parents, who are hoping for a miracle, may be able to be
persuaded, by the lights of their own personal . . . religious
beliefs, that waiting indefinite periods of time for a miracle to
occur while a child is suffering, and while scarce medical
equipment is being denied to other children, is not the right thing
to do," Dr Clarke writes.
Dr Mark Sheehan, an Ethics Fellow at the University of Oxford,
describes religion as discussed in the paper as a "red herring".
There are, he argues, "other things going on in these cases", and
they would be better resolved by being interpreted accordingly,
with a focus on "the well-articulated ethical reasons that apply to
Charles Foster, from Green Templeton College at the University
of Oxford, suggests that English law, in which the child's best
interests are paramount, is already adequate to the challenge posed
by the cases described in the paper. He also argues that these
interests cannot be judged only according to medical criteria, but
as a "holistic exercise".
He is critical of the assumption that "there is some sort of
democratically ordained mandate to impose secular values on
everyone." He suggests that a parent's refusal to withdraw
treatment from a child is something that "a truly secular society,
rejoicing in diversity, should be keen to respect, as long as it is
consistent with the best interests of the child, as broadly