Memorandum 31
Submission from Antenatal Results and
Choices (ARC)
This submission supports retaining the current
time limits for legal abortions and outlines why a scientific
or medical definition of serious abnormality is not required or
desirable in respect of abortion allowed beyond 24 weeks.
INTRODUCTION
ARC (Antenatal Results and Choices) is the only
UK charity that offers specialised information and support to
parents before, during and after antenatal screening and testing
and when an abnormality is diagnosed in their unborn baby. Help
is provided for as long as is needed whatever decision is made
about the future of the pregnancy. We have a non-directive approach,
believing that, with appropriate information and support, parents
themselves are best placed to make the decisions in this context
which are right for them in their individual circumstances. We
also have a well-established training programme for health professionals
involved in antenatal testing and its aftermath with the aim of
improving care in this sensitive area of practice.
ARC was first established as a charity in 1988
as SATFA (Support after Termination for Abnormality). We became
ARC in 1998 to reflect the increase in contact we were receiving
from parents concerning antenatal screening and testing in general.
However, our core membership remains those who have had a termination
after a diagnosis as we are the only organisation specialising
in support in this area. While we acknowledge that we are neither
medically qualified nor directly involved in academic research
in the area of the Committee's inquiry, we do feel we are well-placed
to submit qualitative evidence regarding termination for fetal
abnormality due to our wealth of experience in this area. This
evidence is based on our contact with our membership, parents
on our National Helpline, with health care professionals attending
our training programmes and our role as Advisors on many research
studies.
1. (b) Is a scientific or medical definition
of serious abnormality required or desirable in respect of abortion
allowed beyond 24 weeks?
1. The first point to make is that terminations
for abnormality after 24 weeks are few. In 2006 there were a total
of 136 in England and Wales, which equates to less than 7% of
the total number of terminations performed under clause E or 0.07%
of the total abortion figure for that year. These figures are
similar to those for previous years.
2. We are against any proscribed lists of
those conditions deemed to meet the provision in the law that
permits abortion under clause (E). "When there is substantial
risk that if the child was born it would suffer from physical
or mental abnormalities as to be seriously handicapped."
Such lists would be a consequence of a "scientific or medical
definition of serious abnormality". The wording as it stands
enables clinicians and parents to collaborate effectively and
come to the decision that is most appropriate in individual circumstances.
This is crucial as many conditions that are diagnosed in pregnancy
have an uncertain and variable prognosis.
3. According to the feedback we receive
from parents and consultants, there is an enormous amount of caution
and sensitivity around terminations for fetal abnormality after
24 weeks of pregnancy. Clinicians are acutely aware of both their
professional responsibility and their responsibility to work within
the law, and parents are making the painful decision to end a
wanted pregnancy at a late gestation, which is not something they
would consider for what might be seen as a "trivial"
reason. We see nothing positive to be gained for either party
by establishing definitions.
4. If the decision were made to define "serious
abnormality", requiring a list of example conditions, we
would posit the following questions as being highly problematic.
Who would be tasked with drawing up the definitions? Would the
definition of "serious handicap" be based on a medical
or social model and where would the objective evidence come from
to create what would become a hierarchy of disabilities?.
5. Despite developments in testing technology,
it remains the case that many conditions are not detected until
the mid-pregnancy scan. This is the ultrasound scan offered at
approximately 20 weeks gestation to check for structural abnormalities.
When a problem is found it is almost always necessary to perform
follow up tests, and some conditions will require monitoring as
they can vary in severity over time. In the absence of a defined
list, clinicians and parents can plan care pathways that are appropriate
in individual circumstances and have the opportunity to rethink
decisions if the circumstances change, ie if the unborn baby's
condition deteriorates.
6. Unfortunately improvement in scanning
technology in recent years has not been accompanied by comparable
improvements in the provision of clear prognoses after an abnormal
finding has been made. We have regular contact from parents who
have had a brain abnormality picked up at their mid-pregnancy
scan or later (sometimes when they were having a scan for other
reasons eg to check the position of the placenta. These parents
are often particularly distressed because their specialists give
them a variety of potential outcomes. And these can range from
the prospect of their baby having no or mild developmental delay
to the possibility of severely impaired brain function. The law
and wording of clause E as it stands means clinicians can give
parents time, in these particularly challenging scenarios, to
work out how to proceed.
THE IMPORTANCE
OF RETAINING
THE 24 WEEK
TIME LIMIT
FOR MOST
LEGAL ABORTIONS
7. Although there has always been professional
caution around sanctioning terminations of pregnancy for abnormality
after 24 weeks, we have noted that this has increased in recent
years. The reason for this is likely to be the attempt in 2003
by the Curate Joanna Jepson to instigate a judicial review over
the case of a post 24 week termination of a baby diagnosed with
a cleft palate, with the intention of bringing criminal charges
to bear against the clinicians involved. Despite the fact that
her attempt was unsuccessful, there was tremendous media interest
in the case which led to the doctors involved being personally
identified. As a result, there is now a variation in practice
across the UK in relation to post 24-week terminations. So when
an abnormality is diagnosed after the mid-pregnancy scan, some
parents are asked to make the painful decision to end their wanted
pregnancy before the end of the 24th week, without the time they
may need to make it. In our experience of supporting parents in
the aftermath of this decision, a major factor in their coming
to terms with their experience and consequently their ability
to move on positively with their family lives is that they can
look back and feel confident that they had time to access and
assimilate information about their baby's condition and to work
out the way forward that was right for them. In some cases, parents
may discover over time that the prognosis for their baby has improved
and with the opportunity to delay the decision a pregnancy may
be continued to term.
8. Despite the improvements that have been
made in providing earlier diagnoses in pregnancy using first trimester
screening tests, it is important not to assume that this means
that most parents can opt for earlier terminations of pregnancy
and thus would not be affected by a reduction in time limits.
It is still true that a large proportion of problems in an unborn
baby first become apparent at the mid-pregnancy scan which in
some settings is not offered until 22 weeks gestation. It is not
possible to offer this scan significantly earlier without compromising
its effectiveness. It is also the case that first trimester screening
tests are not available in all units across the country. We take
calls every day on our National Helpline from parents who are
reeling from the shock of being told of something wrong with their
baby at the mid-pregnancy scan, struggling to take in the news
and to know how to proceed. Any encroachment on the current time
limits will result in added pressure on these parents at a time
when they can least withstand it.
9. As the current 24-week time limit appears
to be seen by most clinicians as a "line in the sand",
it seems safe to assume that if there were to be a reduction to
22 weeks or earlier then this gestation would become the new reference
point. And this reference point would be very close to the timing
of the mid-pregnancy scan. The knock-on affect on parents would
be that they may have to make decisions very quickly after their
scan, perhaps foregoing the opportunity to have further testing
or monitoring because the option of termination may be withdrawn
if they delay.
September 2007
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