Values
in End-of-Life Decision-Making:
Some Implications for People with Disability
Jennifer
Fitzgerald
The
rapid development of medical technology has created complex ethical
dilemmas for people with disability, their families and the medical
profession, particularly with respect to end-of-life
decision-making. This
article considers some of the values - such as materialism, mono-culturalism,
individualism and economic rationalism - which underpin current
trends in end-of-life decision making.
The author goes on to consider some of the implications of
the tacit acceptance of these values for the quality of life of all
people with disability, irrespective of whether their lives are
directly threatened by an end-of-life decision.
Introduction
"He
thought of his son, he thought of his wife - of Lakshmi slowly
wasting to extinction, of Dugald like a bright fiery flame suddenly
snuffed out. Thought of
the incomprehensible sequence of changes and chances that make up a
life, all the beauties and horrors and absurdities whose
conjunctions create the uninterpretable and yet divinely significant
pattern of human destiny."
(Huxley,
1964; 30)
At
the end of the 20th Century in the Western world, we find ourselves
part of a society which is less willing, possibly less than ever
before, to surrender to that "incomprehensible sequence of
changes and chances that make up a life" which Huxley
describes. We find
ourselves in a society more able, due to the rapid development of
technology, to control "all the beauties and horrors and
absurdities whose conjunctions create the uninterpretable and yet
divinely significant pattern of human destiny".
We also find ourselves in a society which is less prepared,
perhaps than ever before, to face the ethical issues which these
technological developments place before us.
Less prepared because, in a society of such rapidly changing
social values, there are few commonly agreed upon values which all
members of our society are willing to uniformly apply. The social
contract is up for grabs - possibly to the highest bidder.
We
find ourselves in a society where the ground is shifting so rapidly
that what is 'natural' and what
is 'nature itself' is undergoing profound transformation. Genetic
engineering, in vitro fertilization, antenatal testing, organ and
tissue transplants and life support systems are some of the
technological developments which have begun to challenge our
conceptions of 'nature' and 'natural'.
Life and death are no longer the definitive absolutes they
once were - they are increasingly negotiable variables.
The visions of Huxley's technologically sophisticated
Brave New World (Huxley, 1932) and Orwell's State-controlled Nineteen
Eighty-Four (Orwell,
1954) are no longer future flights of fantasy.
The
ordinary person can now be faced with highly complex moral and
ethical life-and-death dilemmas.
People with disability, family and friends of people with
disability, and professionals who are entrusted with aspects of the
care of people with disability are likely to be faced with such
issues at one time or another.
Some of these issues are:
·
Antenatal testing for impairment with a view to aborting the
foetus in the case of a positive test result
·
Withholding of basic nourishment and/or medical treatment to
newborns with disability
·
Withdrawal of life support systems
·
The making of 'do not resuscitate orders' for people with
disability, and
·
Euthanasia - including the question of advance directives,
such as living wills.
These
practices, directly and indirectly, threaten the lives and hasten
the deaths of people with disability.
Moral
dilemmas of this kind draw fine lines between 'right' and 'wrong'.
The challenge for both the individual and the society is to
determine exactly where that line is, when it has been crossed and
what are the consequences of crossing it.
At times, determining where that fine line lies is in itself
a difficult moral dilemma. For
example, where does the fine line fall when we consider the
distinction between prolonging life and postponing death through
life support systems? Where
does that line fall when we consider the question of parents
consciously conceiving a child they know is highly likely to have a
severe disability and the question of aborting a foetus on the basis
that it has an impairment? There
are many competing issues which pull at the person required to make
decisions in these areas. For
example, in deciding whether a premature baby should be given
intensive care treatment, Professor Max Charlesworth outlines the
following dilemmas:
"
. . . we are confronted with a situation where a complex set of
values is in play: the
sanctity of human life, the special symbolic position of defenceless
and vulnerable infants, the best interests of the child, the likely
future quality of life of the newborn, the professional
responsibilities of physicians and other health carers, and the
comparative costs of health treatment." (Charlesworth,
1993:38)
While
as a society, we have rapidly increased our scientific and
technological capacity, we have not simultaneously developed our
capacity, both as individuals and as a collective, for deep
reflection upon ethical issues.
Ethics committees suddenly began to spring up when we
realized that we were getting out of our ethical depth as scientific
advances, particularly in the field of genetic engineering, were
taking us to places we had not been before.
Questions were being asked which demanded an ethical maturity
which we did not have and at the bottom line was the urgent
question, "What should we do?"
The
trend towards non-imposition of one's values upon another, which has
been fed by individualism, has further muddied the ethical waters.
It is clearly not possible to ever be value-free - as
Steindl-Rast says ". . . not to choose is to choose.
If you say you are value free, you are only following the
dominant values" (Capra et al, 1992:172).
Nevertheless, the current unwillingness to state
values means that ethical dilemmas are frequently resolved in a
laissez-faire manner by the unfettered and unguided interaction of
social forces.
The
genome project in U.S., a project to catalogue all the genes of the
DNA molecule, and a project with broad ethical implications for
people with disability, is one such arena in which the participants
are willing to allow the ethical dilemmas to be resolved in a
value-free framework. An
article on Dr Francis Collins who heads the project alludes to this
value-free framework. "Personally
Collins is distressed by abortion, a common outcome of prenatal
screening for genetic defects.
Yet as a geneticist he honours a code of professional ethics
that demands he hide from patients his own feelings of right and
wrong. As the
discoveries of disease genes move from the lethal maladies of early
childhood to the lingering ailments of advanced adulthood, Collins
confesses an increasing level of personal discomfort.
In talks he gives on Huntington's disease, he invariably
shows a slide of the folk singer Woody Guthrie, "one of my
heroes". He goes
on to explain that Guthrie died of Huntington's, but he leaves
unspoken the terrible questions:
Was Guthrie's life not worth living?
If he had been aborted, wouldn't it have been everyone's
loss?" (Nash, 1994:31)
Value
Base of Current Ethical Decision-Making Trends
The
implications of our answer to the question - what should we do? -
are far-reaching, not simply in terms of the pragmatic question of
what we should do in a given situation, but more particularly in
terms of the underlying values, often unspoken and sometimes
unconscious, which shape the decisions we make.
The values which underpin the life-threatening and
deathmaking practices outlined above impact critically on the lives
of all people with disability, whether or not their lives are directly
at risk from these practices.
Let
us look, by way of example, at some of the values which underlie
antenatal screening for impairment.
Antenatal screening is routinely offered to pregnant women in
Australia. Selman noted
that in South Australia, maternal serum alfafeto-protein (MSAFP)
testing is routinely offered to antenatal patients and that it is
almost always combined with a screening test for Down's syndrome (Selman,
1994:650). One of the
main purposes of antenatal screening is to offer to the parents of
the child the option of aborting the foetus.
The overwhelming majority of Australians, according to
studies undertaken, support the abortion of a foetus on the basis
that it has an impairment. A
study conducted by Kelley and Evans and cited by Robertson
showed that 70% of Australians believed that abortion should
definitely be allowed when the child would be born with a serious
impairment (Robertson, 1992:13).
While no statistics are kept on the number of abortions which
actually occur on these grounds, it is generally accepted that a
significant number of abortions on the grounds of impairment do
occur each year.
Underpinning
this quite broad acceptance of antenatal testing and selective
abortion are certain social values which, although their acceptance
may be unconscious, nevertheless impact generally upon the lives of
people with disability. Materialism,
mono-culturalism, individualism and economic rationalism are
inextricably woven into the acceptance of practices such as
antenatal testing and selective abortion, and receive their social
validation and expression through societal acceptance of selective
abortion.
Materialism
Technology
and industrialization have given us an increasing control over our
physical world. Both
the process of production and the products of our labour have come
to occupy more and more of our thought space.
This has brought about a psychological shift in the way in
which we perceive the world and our place in it.
An all pervasive materialism has created the attitude that
all that is real and important can be held in one's hand and that
that which is real and important
- the product - is created through control and domination of
the production process. This
is such a marked feature of our culture that it has led to the
commodification of even non-material things such as ideas.
Questions of subjective value therefore become problematic
since they cannot be resolved through quantification or measurement.
Our
expectations for our own lives have become increasingly aligned with
our expectations for our products.
We demand the perfect product - and feel entitled to reject
the imperfect. In a
disposable society, imperfection is eminently disposable.
In rejecting the child with impairment, we are exercising our
'right' to perfection.
Materialism
has affected our thought processes, our perceptions, and our methods
of problem solving. With
this increasing emphasis upon quantification and domination of the
physical world, our capacity to process, synthesize and simply 'live
with' the unquantifiable, the metaphysical, the 'different' has
diminished.
Mono-Culturalism
While
human beings share the same essential drives and aspirations, the
way in which these are expressed through culture is multi-faceted.
Humanity has many, many faces, colours and forms of
expression. It is this
diversity which gives to humanity its unique beauty.
Yet, we in the Western world, seem afraid of difference.
We have failed to understand that one human culture can be
expressed through many different forms and have sought to impose a
sameness of expression - a mono-culture.
Our
wholesale acceptance of materialism has made difference and
diversity less acceptable as we strive to attain the perfect and
uniform product. We
seek to whitewash our world with a sameness which sanitizes and, in
effect, de-humanizes, humanity.
This desire to control the chaos of the world is as
destabilizing to a society as it is to nature.
"Chaos
is absolutely essential for the emergence of new life forms.
Chaos allows for the chance meeting of two previously
unconnected elements which could not have met in a totally ordered
world . . . Both chaos and diversity are essential to life and
therefore are inseparable from sustainability . . . Could it be that
those in the Western world are yet to learn that their survival
depends on social and cultural diversity and tolerance of some
chaos? Segregated,
regimented, mono-cultural cities are socially, and in the long term
economically, unsustainable . . .
Such
a mono-cultural existence impoverishes all those in the city . . .
The segregation of those who are elderly, young, disabled, poor or
from a different ethnic background is not so much to their detriment
but to society's. These
people have gifts to enrich the lives of others and society is the
poorer for not having them. These
gifts may not always be comfortable, and often they challenge
prejudices and assumptions. They
also throw a comfortable world into chaos.
But . . . it is chaos which provides the opportunity for
worlds to clash, new relationships to form and new life forms to
emerge. Such
experiences are an essential part of the maturing and growing
process." (Engwicht, 1992:26-27)
Individualism
and Individual Autonomy
The
social will to translate values of materialism and mono-culturalism
into action derives from the acceptance of individualism and
individual autonomy in our society.
In a society based more on rights (and less on
responsibility), the principles of individualism and individual
autonomy have risen to new heights.
"Certainly
freedom is promoted as a social, political and aesthetic ideal; but
what is hardly ever mentioned is the inflationary style that has
been paradoxically seen as the self's virtue . . . Within the
perspective of the dominator model of social organization, freedom
has become unconsciously linked with a conquest mentality and with
'hard' rather than 'soft' individualism - that is, with a notion of
power that is implied by having one's way, pushing things around,
being invulnerable."
(Gablik, 1991:64)
The
principle of personal autonomy shapes policy on selective abortion
in a number of ways - and from a number of angles.
The personal freedom of the
parents to choose not to have a child with impairment is upheld
as an important reason in favour of selective abortion.
This, however, clearly begs the question:
Who owns the child?
In
addition, it is also argued that the
child itself has a 'right' not to be born.
In this sense, it is seen as an infringement on the child's
personal autonomy to allow it to be born.
It is these principles which underly recent decisions by the
U.S. Courts to allow civil actions for wrongful life.
These legal actions deeply challenge society's acceptance of
diverse and 'imperfect' life.
A
wrongful life action is brought on behalf of a child born with an
impairment on the basis that had the child's parents been informed
of the child's impairment while in utero, the parents would have
aborted the pregnancy to spare the infant from pain and suffering.
The basis of the claim is that the child is harmed by its
very existence.
Interestingly,
similar cases brought in the respect of healthy children were
dismissed on the grounds that such a legal action potentially
damaged the child's self-esteem (Blumberg, 1994:9).
Such concerns have not inhibited Courts from allowing
wrongful life claims in the case of children with disability.
In
a 1983 decision, Harbeson v.
Parke-Davis Inc. (1983) 656 P. 2d 483, the Washington Supreme
Court, in recognizing that a right to bring wrongful life actions
existed, stated that "antenatal testing and genetic technology
provided benefits to individual families and all of society by
avoiding the vast emotional and economic costs of defective
children".
Such
applications of individualism fail to incorporate some notion of
interconnectedness between the elements of a society.
Capra presents an alternative notion of personal freedom:
"In
connection with our freedom, it helps to distinguish between the
individual and the person. An
individual is defined by
what distinguishes it from other individuals:
so many individual eggs in this crate; so many human
individuals in this population.
A person is
defined by the relationship to others, to other persons and to other
beings in general.
We
are born as individuals, but our task is to become persons, by
deeper and more intricate, more highly developed relationships.
There is no limit to becoming more truly personal . . .
Frances Moore Lappe has said something very significant.
When you define a person or personhood through the
relationships to others, she says, this means then that my personal
growth does not hinder yours. On
the contrary, it enhances it. If
I'm capable of relating more to everything around me, you will
profit from it, because I can relate then more to you, and this will
be your growth, and vice versa.
The conventional political idea of freedom, she says, is
elbow room. If I grow,
then you have to diminish, which is Newtonian:
where one object is, another cannot be.
The systemic view of growth and of freedom is one of mutual
enhancement. There's no
limit to it. It's not a
zero-sum game." (Capra et al, 1992:95-96)
Economic
Rationalism
The
expression of individual autonomy in a social climate characterized
by economic rationalism has had the effect of privatizing social
responsibilities. According
to Saltmarsh, "the adoption of a management discourse in the
bureaucracy . . . has led to creating a tension between the
rhetorical commitment to social justice and the tenets of good
management" (Saltmarsh, 1994:9).
People are increasingly gaining the entitlement to 'die with
their rights on'.
For
example, in the United States, health insurance cover for a child
was denied when antenatal tests showed the child had cystic fibrosis
and the parents decided against an abortion.
Health cover was only made available after legal action was
taken (Ballantyne, 1992:19).
The
human cost has not been reckoned in the economic rationalist's
analysis. London ethicist, Agneta Sutton highlights some of the
dangers of the 'inflationary style' of 'hard individualism'.
"This questing after a perfect baby could turn into a
nightmare for some people. The
attitude will be: you
chose to have this child, it is up to you and not the rest of
society to pay for that child's care.
The idea of imposing a form of quality control on our
children has dangerous implications."
(Ballantyne,
1992:19)
Conclusion
It
is when we begin to look at these deep ethical issues - particularly
life-and-death issues - that our values are deeply tested and
clarified. When
we, as a society, decide where we stand on some of these issues, we
are also making a statement about the values which underpin our
stance.
When
we state that we value classic beauty and perfection, we are also
stating that we do not value difference and disability.
When we state that individual autonomy is paramount, we are
also stating that we are an increasingly fragmented society with
less and less responsibility for each other, and less and less
awareness of "the essential intertwining of self and other,
self and
society"
(Levin, 1989). When we
state that social policy must be put through an economically
rational filter, we are also stating that human life has a price tag
attached to it. When we
challenge the 'right' of people who fall within certain categories
to live, we also challenge the quality
of the life of every other person in that category.
These
life and death issues challenge us to measure the gap between our
values in rhetoric - for example, the values of inclusion which
underpin anti-discrimination legislation and the Disability Reform
Package - and our values in action - for example, selective abortion
on the basis of impairment. It
is important for us to analyze and to understand those values which
stand behind the positions we take on certain of these life and
death issues, to be honest about what these positions say about
people with disability and their worth.
It is important because it is these values which determine,
not only whether people from certain groups are allowed to live, but
also the type of life which they have the opportunity to lead.
According
to Wolfensberger, "a society will devalue those who are
perceived as embodying the opposite of what it values" (Wolfensberger,
1992:8). In order to be
fully aware of the likely consequences of adopting certain positions
on these sanctity of life issues, it is important to understand and
consciously acknowledge the underlying values at work in our
decision-making processes. If
those underlying values fail to consciously welcome
and celebrate the very
life of a person with disability, then our social will to support
and include the life
of a person with disability must be deeply questioned.
References
Ballantyne,
A. "The Search for the Perfect Baby",
The Weekend Australian, Nov 7-8, 1992, p. 19.
Blumberg,
L. (1994) "Eugenics vs. Reproductive Choice", The
Disability Rag and Resource, Jan/Feb 1994, pp. 3-11.
Capra,
F. et al (1992) Belonging to
the Universe: New
Thinking About God and Nature, London:
Penguin.
Charlesworth,
M. (1993) cited in Ragg, M. "Lives in the Balance", The
Bulletin, June 22, 1993, pp.
33-38.
Engwicht,
D. (1992) Towards an
Eco-City: Calming the
Traffic, Sydney: Envirobook.
Gablik,
S. (1991) The Re-Enchantment
of Art, New York: Thames
and Hudson.
Huxley,
A. (1964) Island,
Ringwood: Penguin.
Huxley,
A. (1932) Brave New World,
London: Chatto &
Windus.
Levin,
D. (1989) The Listening Self:
Personal Growth, Social Change, and the Closure of
Metaphysics, London; New York:
Routledge.
Nash,
J. (1994) "Riding the DNA Trail", Time
Magazine, Jan. 17, 1994, pp. 30-31.
Orwell,
G. (1954) Nineteen
Eighty-Four, Harmondsworth:
Penguin.
Robertson,
P. (1992) 'Genetic Counselling', Interaction, Vol. 6, No. 2, pp. 13
- 15.
Saltmarsh,
D. (1994) 'Economic Rationalism or Something Else', Australian
Disability Review 2-94, pp. 3-11.
Selman,
E. (1994) 'Antenatal screening for neural tube defects and Down's
syndrome - the importance of pretest counselling [letter]', Medical
Journal of Australia, Vol. 160:
pp. 650 - 651.
Wolfensberger,
W. (1992) The New Genocide of
Handicapped and Afflicted People, Syracuse, NY:
Author.
Selective
Abortion and Wrongful Birth in Queensland:
Veivers
v. Connolly
Jennifer
Fitzgerald (B Ec (ANU), LLB (Hons) U of Q, Legal Researcher,
Queensland Advocacy Incorporated)
Published
in the Queensland Law Society Journal (April 1995), Vol 25 No 2 pp
189-97
Introduction
A
recent decision of the Supreme Court of Townsville - Veivers
v. Connolly (Unreported, Supreme Court of Townsville, de Jersey
J, October 13, 1994) raises several important issues which have
significant relevance for people with disability in Queensland. The
circumstances which led to this case involved a woman, Susan Veivers,
contracting rubella (german measles) in the very early stage of her
pregnancy in August, 1975. Her
doctor, Dr Kenneth Connolly, failed to positively diagnose the
rubella because he failed to perform adequate blood tests upon Mrs
Veivers when she presented herself to him with symptoms of rubella.
In April, 1976 Mrs Veivers gave birth to a daughter, Kylie.
Kylie was born with intellectual and physical disabilities as
a result of her mother contracting rubella in the early stage of the
pregnancy.
Mrs
Veivers sued her doctor, claiming that, because of his failure to
accurately diagnose the rubella, she had lost the opportunity to
abort the pregnancy.. She
claimed damages for the cost of Kylie's care and medical expenses,
and for the pain and suffering which she experienced.
Kylie also made a claim for damages, although her claim was
abandoned at the hearing. The
reasons for this will be discussed below.
Two
important legal issues were considered by the Judge in the course of
the case: first, the
legality of an abortion performed in the case of a pre-natally
diagnosed impairment of the foetus and, second, claims for damages
for what have been termed 'wrongful birth' and 'wrongful life'.
We consider these issues in turn.
Selective
Abortion
Selective
abortion is the practice of aborting a foetus on the basis of the
characteristics which that foetus has, or is presumed to have.
For example, in some countries, selective abortion takes
place on the basis of the sex of the child.
In many places, selective abortion is commonly used to avoid
the birth of a child with an impairment.
Advanced
techniques of ante-natal testing now allow doctors to predict, with
a reasonable degree of certainty, the likelihood of a child being
born with an impairment. Pre-natal
testing, of one form or another, is made available to most pregnant
women. Ultrasound
testing, which can detect some impairments, is performed on almost
all pregnant women; while more complicated pre-natal testing, such
as amniocentesis is routinely offered to women 35 years of age and
over, who are at higher risk of giving birth to a child with an
impairment.
That
selective abortion on the basis of the impairment of a foetus
commonly occurs is nothing new.
Indeed, it is the availability of the option of abortion
which gives to pre-natal testing a great deal of its purpose and
justification. The
practice of selective abortion on the basis of impairment also
apparently enjoys strong public support.
In the United States, 13 different surveys conducted between
1972 and 1987, consistently brought results of between 75% and 78%
of those surveyed believing that it should be possible for a
pregnant woman to obtain a legal abortion if there is a strong
chance of a serious defect in the baby (Singer, 1994:93).
While
there can be no doubt about the prevalence of the practice of
selective abortion, nor it seems of its general public acceptance,
the ethics of this
practice have never really been consciously, or deeply, considered
in Queensland. And
public support reached without deep social reflection ought not to
be taken as a mandate for any particular practice, particularly when
the practice involves fundamental questions of life and death.
It is usually when specific legislation is proposed that
public debate on the ethics of the practice proposed is generated.
In the case of selective abortion, the practice has evolved
and slipped into acceptance (largely as a result of advancements in
pre-natal testing), over many years, without either the legality or
the ethics of it ever being consciously considered at any very deep
level.
Queensland's
abortion law, which is contained in the Criminal
Code 1899 (Qld), s 282, authorizes an operation "upon an
unborn child for the preservation of the mother's life".
Under Queensland law, the predicted impairment of the child
is not a reason on its own for legal abortion.
In the course of his judgment in Veivers
v. Connolly, Mr Justice de Jersey was required to consider the
legality of an abortion performed on a woman who sought the abortion
because she believed her child would be born with an impairment.
For Mrs Veivers to succeed in her action, it was necessary
for her to establish, at the outset,
firstly, that she could
have legally obtained an abortion in these circumstances and,
secondly, that if a legal abortion were available to her, she would
have availed herself of that opportunity.
Mr
Justice de Jersey found in her favour on both of these points.
Queensland's abortion law, which allows an abortion to be
performed "for the preservation of the mother's life" has
previously been interpreted to allow an abortion which is considered
to be "necessary to preserve the woman from a serious danger to
her mental health which would otherwise be involved should the
pregnancy continue". In
Veivers v. Connolly, the
Judge had to decide whether continuing with the pregnancy in the
circumstances under consideration represented a serious danger to
the mother's mental
health. In deciding
that it did, he said (at p 8) that "continuing with a pregnancy
which would so likely result in the birth of a severely affected
rubella baby, entailed a serious danger to the [mother's] mental
health, albeit a danger which would not fully afflict her in a
practical sense until after the birth".
This
decision is important since it is the first legal recognition in
Queensland that the characteristics
of the foetus, as they are expected to impact upon the mother's
mental and physical well-being, are relevant factors to be taken
into account in determining whether an abortion can be legally
performed. This is
significant, particularly for people with disability, since it moves
the law discreetly over a threshold.
Over that threshold, not every child is equal, nor is every
child equally valued or welcomed.
Over that threshold, a woman has another kind of choice to
make. Not only does she
need to decide, "Do I want to have a child?", she must
also decide, "What kind of child do I want?". By placing a
window on the womb, pre-natal testing allows a woman to consider not
simply the impact of pregnancy on her life,
but the impact of this
particular pregnancy, knowing all the characteristics which it
possesses, on her life. The
effect of this Supreme Court decision is to give a greater legal
recognition to the use of this window in making decisions about
abortion.
Although
Queensland's abortion law still
falls short of the situation in some other jurisdictions - for
example, the United Kingdom
where the predicted disability of the child is enough of
itself to allow abortion, the door has been clearly opened on
selective abortion. Once
the characteristics of the foetus become relevant in any way in the
decision to abort, selective abortion has been sanctioned.
The Judge in Veivers
v. Connolly had no difficulty in predicting that disability in
the child would be likely to impact negatively on the mental health
of the mother and therefore to recognize disability (and logically
also other characteristics of the foetus) as a valid ground for
abortion.
This
is a conclusion which, it seems from the evidence given by doctors
in this case, most members of the medical profession would also have
no difficulty in making. Justice
de Jersey says, in the course of his judgment (at p 9),
"I
am satisfied that in Queensland, and in particular North Queensland,
as at the mid 1970s, were it known that a woman had been infected
with rubella in the early stages of pregnancy, therapeutic
terminations commonly occurred, provided the necessary certificates
and consents were obtained. The
evidence of Dr Salter, Dr Richards, Dr Doyle and Dr Pietzsch amply
supports that view. A
therapeutic termination could lawfully have occurred in this case,
because it was, as would have been gauged in 1975, necessary to
preserve the first plaintiff from the serious danger to her mental
health - and not merely the normal dangers of pregnancy and
childbirth - which would have been entailed were her pregnancy to
continue."
However,
it is important to be clear about the value judgments which underlie
such a conclusion and about the public policy implications of making
such value judgments. Why
was it so easy for the judge and the doctors who gave evidence in
this case to conclude, without any attempt at justification, that
the child's disability would so definitely damage the mother's
mental health. There is
an assumption that the bearing of such a child is a traumatic
occurrence. This
assumption is both fed by, and feeds, the negative public perception
of people with disability. For
example, in Mr Justice de Jersey's judgment itself, there are many
words and phrases used which convey a very negative perception of
people with disability. He
describes caring for Kylie as a "stressful, burdensome
task" (p 16), as an "arduous responsibility" (p 18).
He says that Mrs Veivers was "left to bear the child,
ultimately born with those terrible lifelong deficiencies" (p
2). He describes the
anguish which Mrs Veivers endured as "immense" and
"almost passing comprehension".
This
is not to deny, in any sense at all, the additional responsibility
and support needs of parents of people with disability, but in such
circumstances, a more appropriate social response might be one of
support, rather than sympathy.
It is important to question whether the perceived danger to a
woman's mental health is actually caused by the birth of a child
with disability or by the social context into which that child is
born, by society's unwelcoming attitude to that child and its lack
of support for the child's parents in upbringing that child.
The
impact of contextual factors on the way in which a mother might
perceive certain characteristics of her child is readily apparent in
the case of some Moslem women facing the prospect of giving birth to
girls. In most social
contexts, the birth of a girl child is a welcomed event.
Yet, for a Moslem woman the birth of a girl child could
significantly affect not only her mental, but also her physical,
health. Her husband may
beat her; he may leave her. According
to the criteria outlined in the Criminal
Code as interpreted in Veivers
v. Connolly, this would be a valid ground for abortion.
But on public policy grounds, would we really like to
sanction the abortion of a foetus on the grounds only that it is
female?
Queensland
abortion law has developed in a rather piecemeal manner, initially
by legislation, and then through judicial interpretation.
This piecemeal approach has led us
into the legal acceptance of a practice - that is, selective
abortion - the consequences of which have never really be considered
from a public policy point of view.
While
much of the debate in favour of abortion has been focussed upon the
woman's right to
choose, (in fact, it was these arguments which persuaded our
Parliament to enact the provisions which allow legal abortions to
take place), the debate has clearly avoided the quality of life
judgments which are now playing a part in decisions to abort.
According to Sinding Aasen,
"If
the question of who should make the decision is made the primary
issue, this implies that the material discussion on the ethical and
social aspects connected to 'quality control' of the foetus is
pushed into the background."
(Sinding Aasen, 1993:96)
Indeed
the focus on the woman's right to choose, also avoids some other
essential philosophical issues in the abortion debate.
As Singer states,
".
. . those who defend abortion on request do not describe themselves
as 'anti-life', or even 'anti-foetal-rights-to-life".
They prefer the term 'pro-choice', thus presenting the issue
as one about a woman's right to choose whether to remain pregnant or
not. They try to avoid
taking a position on when a developing human being first has a right
to life. This may be
good politics, but it is poor philosophy.
To present the issue of abortion as a question of individual
choice . . . is already to presuppose that the foetus does not
really count. No-one
who thinks that a human foetus has the same right to life as other
human beings could see the abortion question as a matter of choice,
any more than they would see slavery as a matter of the free choice
of slaveholders."
(Singer (1994), p 85)
Whether
we realize it or not, and whether we like it or not, the principle
of social equality is being significantly undermined by our
acceptance of the practice of selective abortion.
Veivers v. Connolly
recognizes that the characteristics of the foetus are relevant in
determining whether or not an abortion can legally occur.
The law has taken us this far.
How will we answer the next questions which are likely to
arise: Which
characteristics? Is the
gender of the child a valid reason for aborting the pregnancy? From
our example of the Moslem woman above, the abortion could certainly
be justified under the guidelines laid down in Veivers
v. Connolly. Is
disability a grounds for abortion?
What type of disability?
A hare lip, a cleft palette, a turned eye, Down's syndrome,
spina bifida? Then the question comes:
Who makes these decisions?
Who decides which characteristics justify selective abortion?
All of these are questions of degree which arise when we open
the door on selective abortion.
Perhaps this is one
door which should never have been opened.
But it has been opened and we have had the opportunity, at a
cost, to see the impact of what lies inside upon the principle of
social equality. However, the opening of a door does not oblige us
to leave it ajar. As a
society, we have the opportunity to discriminate between practices
(and values) which either celebrate or seek to oppress human
diversity.
"Seen
from the standpoint of the individual, it is neither unnatural nor
indecent to want a healthy and perfectly developed child.
An essential question, however, is whether the transition
from wishing to actually having the opportunity to choose does not
become a problem in a larger perspective." (Sinding
Aasen, 1993:97)
Peter
Singer, who advocates for the use of quality of life assessments in
all end-of-life decisions says this:
"Implicit
in the acceptance of prenatal diagnosis and abortions is both a
willingness to make quality of life judgments (that is, the judgment
that life with a particular kind of disability is not as desirable
as the life of a normal child) and an expression of the priority of
quality of life over sanctity of life, at least as far as the foetus
is concerned." (Singer,
1994:93)
Singer
is correct: prenatal diagnosis and abortion, used together,
inescapably lead us to making end-of-life decisions based on quality
of life judgments. However,
these practices deeply and significantly undermine the notion that
all human beings are of equal worth and value to a society.
They effectively introduce a quasi-caste system in which the
'untouchables' become the 'expendables' in all situations involving
end-of-life decisions.
Wrongful
Birth and Wrongful Life Actions
The
main issues before the Court, in Veivers
v. Connolly, were claims for damages for what have been termed
wrongful birth and wrongful life.
Wrongful
Birth - Defined
A
wrongful birth action is brought by the parents of a child claiming
damages for the costs of caring for the child and the emotional
distress they have suffered as a result of the child's birth.
Wrongful birth actions have tended to cover two types of
situations. First,
where a woman falls pregnant as a result of another person's
negligence - for example, in the case of a sterilization wrongfully
performed or a pharmaceutical prescription wrongly filled.
Second, where the opportunity to abort a child on the grounds
of impairment is lost as a result of another person, usually a
doctor, failing to diagnose an impairment.
In
Veivers v. Connolly, Mrs Veivers claimed that, had the rubella
been properly diagnosed when she first presented herself to Dr
Connolly, she would have elected to abort the pregnancy and thereby
been saved the emotional and financial costs of bringing up a child
with disability. She
claimed damages for:
·
mental distress and the destruction of a normal family life
brought about by her daughter's disabilities and the imposed
responsibility to care for her daughter, and
the financial costs associated with her daughter's care.
Her
claim was successful and she was awarded $906 040 damages, $50 000
of which was attributed to her pain and suffering.
Wrongful
Life - Defined
A
wrongful life claim differs slightly from a wrongful birth claim,
although it usually arises from the same set of circumstances.
A wrongful life claim is made on the child's behalf.
The child claims that, were it not for another person's
negligence, she or he would not have been born.
The child, in effect claims, that she or he would have been
better off if she or he had been aborted and therefore claims
damages for his or her wrongful existence.
The cases in which such claims have been made usually involve
a child being born with an impairment which, due to some negligence
was not detected prior to its birth and the parents, therefore, lost
the opportunity to abort the child.
In
Veivers v. Connolly, a
claim for damages was initially brought on behalf of Kylie, Mrs
Veivers' daughter, however, this claim was abandoned at the Court
hearing. It was
conceded that, in Australia, there was no legal authority for such
an action. The Court
relied on an English decision, McKay
v. Essex Area Health Authority (1982) 1 QB 1166.
That was a case very similar to Veivers
v. Connolly: the mother contracted rubella during the early
stages of the pregnancy, the doctor failed to diagnose the rubella
so that the mother had no opportunity to choose to abort the
pregnancy and the child was born with physical and intellectual
disabilities. The
English Court of Appeal there decided that there was no legally
recognizable action of wrongful life.
Lord Justice Stephenson said (at p. 1181),
"I
am ... compelled to hold that neither defendant was under any duty
to the child to give the child's mother an opportunity to terminate
the child's life. That
duty may be owed to the mother, but it cannot be owed to the child.
To
impose such a duty towards the child would, in my opinion, make a
further inroad on the sanctity of human life which would be contrary
to public policy. It
would mean regarding the life of a handicapped child as not only
less valuable than the life of a normal child, but so much less
valuable that it was not worth preserving, and it would even mean
that a doctor would be obliged to pay damages to a child infected
with rubella before birth who was in fact born with some mercifully
trivial abnormality. These
are the consequences of the necessary basic assumption that a child
has a right to be born whole or not at all, not to be born unless it
can be born perfect or "normal", whatever that may
mean."
The
Court of Appeal went on to point out that it was almost impossible
in any such action to ascertain the nature of the injury and the
costs associated with that injury.
Lord Justice Stephenson said (at p. 1181),
"The
only loss for which those who have not injured the child can be held
liable to compensate the child is the difference between its
condition as a result of their allowing it to be born alive and
injured and its condition if its embryonic life had been ended
before its life in the world had begun.
But how can a court of law evaluate that second condition and
so measure the loss to the child?
Even if a court were competent to decide between the
conflicting views of theologians and philosophers and to assume an
"after life" or non-
existence
as the basis for the comparison, how can a judge put a value on the
one
or the other, compare either alternative with the injured child's
life in this world and determine that the child has lost anything,
without the means of knowing what, if anything, it has
gained?".
Similar
cases have been brought to Court in the United States and almost all
have been unsuccessful. In
the first North American wrongful life case, Gleitman
v. Cosgrove (1967) 227 A. 2d 689, Chief Justice Weintraub stated
(at p. 711) that the child's complaint involved saying that he would
have been better off not to have been born at all:
"Man, who knows nothing of death or nothingness, cannot
possibly know whether this is so.
We must remember that the choice is not being born with
health or being born without it. . . . Rather the choice is between
a worldly existence and none at all . . . To recognize a right not
to be born is to enter an area in which no one can find his
way."
While
not every United States court has rejected wrongful life actions ,
many US Courts, despite their renowned willingness to entertain
'creative' litigation, have remained unwilling to recognize wrongful
life claims. The public
policy implications are too grave.
These actions do not only threaten the sanctity of life
principle, but also deeply threaten any concepts of social equality
which we might espouse. To
judge that one person's life has so little value that she or he
would be better off had she or he never lived is to deeply challenge
the worth of that person's lived existence.
The judging of a person's life as of such little value is
hardly likely to compel caring and supportive responses from other
community members.
Wrongful
Life and Wrongful Birth - Are the Differences Merely Cosmetic?
While
the many US and UK Courts which have consistently denied wrongful
life claims are to be commended for their willingness to draw the
line at, effectively, imposing a duty upon one person to take
another's life, their acceptance of wrongful birth claims has
nevertheless opened the door on the corrosive social implications
which they were seeking to avoid in disallowing wrongful life
claims.
Wrongful
birth claims and wrongful life claims differ little in their
practical and public policy implications; their difference is of
more interest to lawyers. In
a wrongful life claim, the child is arguing that it would be better
off if it were not alive. In
a wrongful birth claim, the parents are claiming that they
would be better off if the child had not been born..
To allow such an action must seriously undermine a child's
self-esteem and sense of belonging and being wanted.
It must also seriously undermine our collective sense of
responsibility and caring for those people whose lives are deemed to
be so injurious to their parents' well-being.
It does nothing to remove the image which people with
disability must already fight against and that is one of being a
burden.
These
cases differ from other cases, for example, the thalidomide cases,
where the child's impairment is directly related to the negligence
of the doctor in prescribing medication which harms the unborn
child. Those cases are
like any personal injury case where a person who negligently harms
another must accept responsibility for that harm.
The only difference between the thalidomide-type cases and
other personal injury cases is that the injury occurs while the
child is in utero. In
wrongful birth cases, however, the negligence involved is the
failure to make available to the mother the opportunity to abort the
pregnancy.
