Parliamentary Inquiry into Abortion on the Grounds of Disability
Submission from Barbara Gelb, CEO of Together for Short Lives
Introduction
Together for Short Lives is the UK organisation for children’s palliative care. We
support all those who love, care and support children with life-limiting and lifethreatening conditions in the UK – families, professionals and services, including
children’s hospices.
Together for Short Lives has sought the views of its members across the children’s
palliative care sector in the preparation of this response. The nature of this Inquiry is
such that it elicits a range of different, strongly held views from different individuals
and organisations supporting children with these complex conditions. The response
seeks to reflect the challenges and complexities involved in decisions around
abortion and fetal disability rather than it representing the views of all in the
children’s palliative care sector.
Nature of the inquiry
The two questions put by the Inquiry are "Is the law fit for purpose?" and "Is it
discriminatory to permit abortion up to birth for disability?”. The terms of the Inquiry
mean that the result of any change would be to reduce the number of abortions that
would be carried out. The questions are therefore 'value laden' in the sense that
they inevitably touch on strongly-held personal beliefs about the tension between
rights of mothers over their bodies and rights of fetuses to life in the debate about
abortion itself. There is a risk that the rapid response required by the Inquiry will give
disproportionate weight to views that are strongly held, irrespective of whether they
are also carefully considered.
The value-laden content does not invalidate the questions, but an important
consideration in preparing our response is to note the apparent prior expectation of
the Inquiry that a change is needed. It is inevitable that such a change would lead to
fewer abortions, and a greater number of mothers unwillingly carrying affected
fetuses to term. Together for Short Lives has no single view on the issue of
abortion itself.
Definition of important terms
Together for Short Lives feels that some important terms are ambiguous in ways that
are relevant to the discussion. The first is the term '[not] fit for purpose' which in this
response is taken to mean simply 'in need of revision'. The second is
'disability'. That term encompasses a wide range of problems from the trivial to the
very significant, and does not on its own distinguish between social, medical and
other models of disability. It is likely that those differences are germane to the ethical
and legal issues under discussion.These important terms should be defined
carefully.
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We have chosen to use the words ‘affected’ and ‘unaffected’ interchangeably with
‘disabled’ / ‘non-disabled’.
The remit of Together for Short Lives
The terms of the Inquiry relate to differences in the moral status of those with and
without disability before they are born. Together for Short Lives represents those
caring for children with life-limiting conditions, particularly families and professionals
providing palliative care. It is not common in the UK for palliative care to be offered
pre-natally, and when such contact is made, it is usually in preparation for the child's
birth so that the question of abortion does not arise. However there are occasions
when families facing such decisions are already known to palliative care services
such as children’s hospices because of their involvement with an older affected child
in the family and therefore there are rare circumstances where palliative care
services are directly involved in supporting families in relation to decisions that only
affect fetuses, such as those around termination.
Together for Short Lives encounters children with disabilities only when those are the
result of a life-limiting or life threatening condition. Although there is substantial
overlap between the constituencies of children with life-limiting conditions and those
with other complex conditions that cause disability, the two are not precisely coterminous.
Nevertheless, we feel that we have some expertise that is relevant. Our members
include families of children with disability who can comment with some authority on
their own experience as a parent of a disabled child and in terms of the quality of life
experienced by their child. Together for Short Lives also has considerable expertise
in developing information resources in respect of life quality, uncertainty and
prognosis.
The Response
This submission will only address to a greater or lesser extent the issues
covered in bullet points 3 and 4 of the Terms of Reference of the Inquiry
1.
Whilst the current legislation making it easier to remove affected humans from
society than unaffected humans could be perceived as discriminatory, it must at all
times be understood in the context of the complexity of decision making in relation to
those who are profoundly affected. One Consultant Paediatrician we consulted
conveyed the intensely personal and individualised decisions that parents of affected
children regularly face and this reflects the complex nature of the decisions facing
parents of affected fetuses. This suggests that there should indeed be differing
choices for parents of a more affected fetus than for parents of an unaffected fetus.
2.
Assessing the effectiveness of the information and guidance provided
to families following the diagnosis of a disability and the impact that has on
outcomes.
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Together for Short Lives strongly endorses the importance of full discussion with
parents, and the expectation that information about prognosis should be of high
quality. It should be accessible, clear and honest. The limitations of certainty should
be clearly acknowledged, both where the data is not known (for example, where the
diagnosis is not clear) and where the situation is inherently uncertain (for example,
when the impact of the diagnosis on life-span or function cannot be
known). Professionals imparting information should be adequately trained in
communication so that their own beliefs do not inappropriately influence their
estimates in discussion with patients.
It is also essential that those discussing the decision about abortion are familiar
with the nature and extent of local palliative care services for children in the
statutory, voluntary and indeed private sectors, and that those services are
offered knowledgeably to all parents faced with such a decision. In addition,
information should also be shared on wider parental experiences of caring for a child
with a disability (both positive and more challenging experiences).
Babies with life limiting conditions will often need access to high quality
palliative care from the moment of birth, and families should be given information
about available local services.
The extent to which families can feel those decisions are freely made depends on a
number of factors that need to be acknowledged from the outset:

Effective decisions require time for considered discussion. One potential
effect of reducing the age limit at which abortion could be carried out in
affected fetuses would be to reduce the time available to parents to consider
the implications of diagnosis in making this important and complex and
potentially life changing decision, whether in favour of going to full term
pregnancy or opting for abortion. Identification of a problem with the fetus
and/or a clear cut diagnosis may not occur until later in a pregnancy –
sometimes in the second or even third trimester. This means that high quality,
clear and reliable information may not be available to support the woman in
decision making until after 24 weeks.

Families of affected children are likely to need financial support. A likely
consequence of changing the law would be to increase the number of affected
children who are born, and that the considerable financial impact of this needs
to be acknowledged from the outset. Families faced with decisions about
abortion need to know that they will be adequately supported by the State if
those decisions are to be made freely.
18 March 2013
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