Now the Church of England is on the bandwagon.   I feel so sick reading 
this.  How does nobody realise that doctors assessments of prem babies 
can be wrong.   The doctors said when I was born, in semi-rural New 
Zealand in 1974, that there was one in a hundred chance of me surviving, 
and if I survived I would be a vegetable, and not be able to walk or 
talk.  I can do both, the walking not so well, and the talking *too* 
well for the comfort of a lot of people. ;-)  
They were clearly way off in their assessments, and this group alone has 
dozens of those sorts of stories, let alone the disability community at 
large.  The doctors must *know* how inaccurate their assessments are, we 
haven't all vanished into back rooms somewhere, but they ignore our 
existence.

:-(

Rayna

-------- Original Message --------
Subject: 	[disabilitystudies] FWD Some sick babies must be allowed to 
die, says Church
Date: 	Sun, 12 Nov 2006 01:01:59 -0000
From: 	Keith Armstrong <[log in to unmask]>
Reply-To: 	[log in to unmask]
To: 	[log in to unmask]



Church of England leaders want doctors to be given the right to
withhold treatment from seriously disabled newborn babies in
exceptional circumstances. The move is expected to spark massive
controversy.

The church leaders' call for some children to be allowed to die -
overriding the presumption that life should be preserved at any cost -
comes in response to an independent inquiry, which is to be published
this week, into the ethics of resuscitating and treating extremely
premature babies.

The decision by religious leaders to accept that in some rare cases it
may be better to end life than to artificially prolong it is a
landmark for the church. The Rt Rev Tom Butler, Bishop of Southwark
and vice chair of public affairs of the

Mission and Public Affairs Council, states in the church's submission
to the inquiry, that 'it may in some circumstances be right to choose
to withhold or withdraw treatment, knowing it will possibly, probably,
or even certainly result in death'.

The church's report does not spell out which medical conditions might
justify a decision to allow babies to die but they are likely to be
those agonising dilemmas such as the one faced by the parents of
Charlotte Wyatt, who was born three months prematurely, weighing only
1lb and with severe brain and lung damage.

The report also suggests the enormous cost implications to the NHS of
keeping very premature and sick babies alive with invasive medical
care and the burden on the parents should also be taken into
consideration.

Doctors wanted to switch off Charlotte's life support machine because
they said her severe mental and physical handicaps left her in
constant pain with an 'intolerable' quality of life. They pointed out
that every time she had an infection, staff would have to give
injections or set up drips that caused yet more pain.

After the case went through the courts, the child, now three, survived
but with severe disabilities. She is now in care as her estranged
parents found it too hard to meet her 24-hour healthcare needs.

The church's call comes in their submission to the Nuffield Council on
Bioethics, an independent body that publishes guidelines on how
doctors should deal with ethical issues. The council set up the
inquiry nearly two years ago in order to consider the implications of
advances which enable babies to be born halfway through pregnancy and
kept alive.

Their statement comes the week after one of Britain's royal medical
colleges called for a public discussion over whether to permit the
euthanasia of the sickest babies. The proposal from Royal College of
Obstetricians and Gynaecologists was welcomed by geneticists and
medical ethicists, but described it as social engineering by others.

In its submission, the Church of England said that although it could
not accept the argument that the life of any baby was not worth
living, there are 'strong proportionate reasons' for 'overriding the
presupposition that life should be maintained'. 'There may be
occasions where, for a Christian, compassion will override the "rule"
that life should inevitably be preserved,' wrote Butler.
'Disproportionate treatment for the sake of prolonging life is an
example of this.'

The church states that it would support the withdrawal of treatment
only if all reasonable alternatives had been fully considered 'so that
the possibly lethal act would only be performed with manifest reluctance'.

But it accepted there were a range of reasons why the final decision
to withdraw or refuse treatment should be made, including the question
of cost. 'Great caution should be exercised in bringing questions of
cost into the equation when considering what treatment might be
provided,' wrote Butler. 'The principle of justice inevitably means
that the potential cost of treatment itself, the longer term costs of
healthcare and education and opportunity cost to the NHS in terms of
saving other lives have to be considered.'

Very premature babies run a higher risk of brain damage and
disability. If they are born at 22 weeks, 98 per cent of them die,
though by 26 weeks the chances of survival has risen to 80 per cent.
Different counties have different policies for very tiny infants.

Babies born before 25 weeks are not given medical treatment in the
Netherlands and in certain conditions, euthanasia is permitted.

When the Nuffield Council produces its long-awaited report on
Thursday, it is expected to reject a Dutch-style limit, with hospitals
required to let a baby below a certain age die, arguing that even two
infants born at exactly the same age can vary widely. Instead, they
are likely to call for much clearer guidelines to doctors about the
issues of viability.

Parents of very premature infants will also be asked to start talking
to doctors at a much earlier stage about the likely health outcome of
their babies, so that they can be prepared for the worst.

The church's submission counsels parents against expecting too much
from medics, and asks doctors to refrain from giving parents false
hope. 'The principle of humility asks that members of the medical
profession restrain themselves from claiming greater powers to heal
than they can deliver,' it said.

'It asks that parents restrain themselves from demanding the
impossible from the medical profession and indeed from themselves and
their own capacity to cope.'


Amelia Hill and Jo Revill Sunday November 12, 2006 The Observer

more goto:

<http://observer.guardian.co.uk/uk_news/story/0,,1945866,00.html>

and

<http://observer.guardian.co.uk/focus/story/0,,1928443,00.html>

� Read Gaby Hinsliff's original article on the premature baby debate here

 

-----------------------

To change your mail settings or leave the C-PALSY list, go here:

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy