Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/j.1467-8519.2011.01906.x
Volume 25 Number 5 2011 pp ii iii
EDITORIAL
HOW NOT TO SAVE A LIFEbioe_1906 2..3 This decision can be questioned. Arguably, Joseph s
condition had by this time deteriorated to such an extent
The case of Joseph Maraachli has become a touchstone that he was no longer capable of suffering. If that is the
for divergent views on how we should think about case, then it would be difficult to say that the trache-
medical treatment at the end of life. Baby Joseph, as he otomy would be contrary to his best interests. It would
has become known, suffers from Leigh s disease, a rare also not be in his best interests. He would have no inter-
inherited neuro-metabolic disorder that, in the severe ests at all. In that situation, one might consider that the
form in which he has it, is always fatal. By the time parents interests in having their child die at home should
Joseph was a year old he was having seizures, he could prevail.
not breathe on his own, his head was small for his age and The objection to this view is, of course, that the trache-
not growing, his pupils were not responding to light or otomy would require medical resources to be used when
following a moving object and his movements were not doing so is not in the interests of the patient. Should
purposeful. At the hospital in London, Ontario, where he Canadian taxpayers be asked to pay thousands of dollars
was being treated until March 2011, all eight physicians so that a baby dies at home with his parents, rather than
who were involved in his treatment agreed that there was in hospital? It would be reasonable to say that they
no treatment that could reverse his condition. His fate should not. If one takes that view, then the Consent and
was to lie in bed until he died. The only consolation about Capacity Board reached the right decision, but for the
his condition was that his consciousness was most likely wrong reasons. (Under the law, it could not have reached
so diminished that he was unlikely to be suffering. its decision on the grounds just suggested.) And if
Given this prognosis, Joseph s doctors proposed resource allocation was the real grounds for the decision,
removing the tube that was assisting his breathing. If he then if someone else would pay for the procedure, that
could breathe unaided, he would go home to be cared for objection could be overcome.
by his parents for the few more months that he could be At this point there was a dramatic development. Priests
expected to live. If not, he would be given medication to for Life, a Catholic anti-abortion and anti-euthanasia
ensure that he did not suffer, and allowed to die. organization stepped in, chartering an air ambulance to
Leigh s disease is an inherited condition, and Joseph s fly Joseph from Canada to Cardinal Glennon Children s
parents had already had one child, eight years earlier, Medical Center, a Catholic hospital, in St Louis. After
who had died from it. They had a child unaffected by the examining Joseph, doctors at the hospital concluded
condition as well. They wanted Joseph to come home that a tracheotomy was  medically appropriate and the
from the hospital so that, in their words,  he would pass operation was carried out. At the time of writing, Joseph
away when God says he should. When the doctors pro- is still alive.
posed removing Joseph s breathing tube, therefore, they Priests for Life boasted that they had  rescued Baby
objected. Their preferred alternative was a tracheotomy, Joseph. The organization s director, Father Frank
an operation that involves cutting a hole in the patient s Pavone, stated that he has been told that it could cost as
neck so that a breathing tube can be inserted in it and much as $150,000 for Joseph s stay in the pediatric inten-
kept permanently in place. This would enable Joseph s sive care unit, and asked his supporters to donate to pay
parents to manage him at home until he died. these costs.
Joseph s doctors refused to do this. They acknowl- Is there anything wrong with this outcome? This is
edged that the operation might prolong Joseph s life, but where people with different attitudes to life will divide.
said it would not improve his well-being. They could see According to the best assessments of the impact of aid,
no justification for further medical intervention. Baby it is not difficult to save the life of a child in a develop-
Joseph s case therefore came before Canada s Consent ing country for about $1000. (For details, see www.
and Capacity Board, which had to decide if the parents GiveWell.org  for example, its evaluation of its top-
were acting in the best interests of their child. The Board rated charity, Village Reach, which delivers vaccines and
decided that the parents were not acting in the best inter- other urgently-needed medical supplies to rural areas in
ests of their child, and therefore overrode their refusal to developing countries.) So if anyone is really serious about
give consent to removing the breathing tube. saving lives, what should he or she do? Treat Joseph, at a
Conflict of interest statement: No conflicts declared
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Blackwell Publishing Ltd.
© 2011 Peter Singer. Bioethics © 2011 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.
Editorial iii
cost of $150,000 so he can live another few months lying alive had been put towards saving the lives of those in the
in bed, probably experiencing nothing at all, or give the poorest nations who lack even the most basic health care?
same sum to an organization that could use it to save 150 What the case of Joseph Maraachli really shows is that
lives  most of them children who would in all likelihood people on the  pro-life side of this debate are not really
have gone on to live healthy lives for many years to in favor of saving human lives. If they were, they would
come? prefer to save 150 lives rather than just one. Instead, they
We ve seen similar questions raised many times. In are focused on preventing what they believe to be moral
2005 the  pro-life movement put a huge effort, and large wrongdoing, and they regard as wrongdoing any decision
sums of money, into  saving Terri Schiavo, who was that will deliberately end the life of a human being. But
diagnosed as being in a persistent vegetative state, and this attitude fails to recognize that we let human beings
whose husband believed she would not wish to be kept die whenever we fail to devote all our resources to saving
alive any longer. In the end, after Congress had been as many lives as possible. Of course, that recognition
recalled specifically to pass a special law to enable a makes ethics extremely demanding, and should lead to
federal court to hear the case, Schiavo was allowed to die. the further recognition that living ethically is not a matter
An autopsy showed that her brain had been irreversibly of obeying a set of simple moral rules. If we are serious
damaged, in the way one would expect of a patient about saving human lives, we must pay attention to all
who goes into a persistent vegetative state after suffering the consequences of our actions.
cardiac arrest. (This does not stop Priests for Life from
holding memorial services each year to mark, as they put
PETER SINGER
it on their website,  the sad and tragic way in which Terri
was treated .) How many lives could have been saved if
Peter Singer is professor of bioethics at Princeton University. His most
all the money used to campaign for keeping Schiavo recent book is The Life You Can Save.
© 2011 Peter Singer. Bioethics © 2011 Blackwell Publishing Ltd.