We asked:- Should aggressive medical intervention be
withdrawn from premature babies in pain and without hope of
These are some of the comments we
“For many years Mencap has been concerned about life and
death decisions involving children and adults with a profound and
multiple learning disabilities. We recognise the extreme difficulty
in making these decisions. They have to be taken sensitively
without making assumptions about the quality of life of the
individual concerned. Decisions should be based solely on whether
the treatment benefits the individual or not.
Relatives of extremely premature babies who are born with
disabilities should always be fully involved in such decisions.
Many people with profound and multiple learning disabilities have a
different quality of life from our own but that does not mean that
their quality of life is not good.”
“The question in itself is questionable. Who decides the
babies are in pain and have no hope of survival? There was a time
when these matters were decided between medical professionals and
parents. Why has this become a matter for the courts?
This question inevitably presents us with the slippery slope
argument i.e. when is a life worth saving and who is in the
rightful place to decide such matters? In a society so fixated in
the perfect image and ability, it could be so easy to decide that
any infant who apparently is not going to measure up to the same is
not worthy of aggressive medical intervention and therefore of
life. I am certainly not a ‘pro-lifer’ but as a disabled person who
lives in constant pain, I fully appreciate the aggressive
intervention that gave me life.
Now like us all, it is up to me to ensure a good quality of
life. Life is good, however, it would be even better if I had the
same opportunities as non-disabled people. I fear it will take more
than the Disability Discrimination Aact to wake people up to their
responsibilities to those already in receipt of aggressive medial
“l don’t agree it should be withdrawn because that will
be encouraging euthanasia. No matter how slim the chance for
survival of that premature baby may be, things can still turn
around miraculously even at the eleventh hour.”
Ministry of Youth, Sports & Social Development, Lagos.
“It seems to me that the excessive efforts to keep some of
these babes alive is kind neither to the parents nor to the child.
Parents are given a sub-message that their child will live – has a
right to live – and never the message that death is very, very sad
but also merciful and that suffering can be spared.
In these circumstances, I believe that a baby should be allowed
to die, gently, being held by the parents and that excessive
efforts at resuscitation should be withheld.”
“The decision to withdraw care for an infant must be done
with the consequences in mind. That is the feelings of guilt or
‘what if’ that remain with the parents, and staff for
The parents must discuss the issue with their medical care team
and explore all avenues of treatment, both conventional and
experimental. Only when the parents are satisfied that absolutely
nothing is left to try, and there is no hope of a life that the
infant will get anything out of, can all concerned rest in the
knowledge that the right decision was made.
It is not just an infant that dies, but all the hope and life
ahead into adulthood that dies too.”