<<

ńňđ. 10
(âńĺăî 12)

ŃÎÄĹĐĆŔÍČĹ

>>

negligent health carer has denied the fetus the opportunity to choose
between a continued life of suffering and withdrawal of treatment in the
form of antenatal care. To describe an abortion in such terms may seem
to many to be unacceptably euphemistic – but, then, the whole concept of
infantile decision-making by parental proxy can be seen as little more
than a sophistic fancy. How important is it, in fact, to establish an
orthodox construct of causation in the circumstances? I admit to being
greatly impressed by the judicial statement:
In attributing causation, the court is primarily making a value judgment on
responsibility. In making this judgment the court will have regard to the purpose
sought to be achieved by the relevant tort, as applied to the particular
circumstances192


191
In McKay, n. 65 above, at QB 1192, All ER 790.
192
Kuwait Airways v. Iraq Airways Co [2002] 2 AC 883 per Lord Nicholls at [74]. I must
acknowledge Morris and Saintier, n. 169 above at 187, for directing me to this citation.
The authors also draw attention to the French rule of equivalence des conditions which
´
Wrongful neonatal life 239

and one wonders whether wrongful life may not be a suitable case for
adjusting principle so as to fit the circumstances.193 Morris and Saintier
point out194 that Nicholas Perruche’s disabled life has two causes: the
rubella and the doctor’s negligence. The doctor was not to blame for his
having contracted rubella, but s/he is to blame for his having to live with
the consequences.
The remaining objection to allowing a diminished life action lies, as
noted above, in the suggestion that, given the uncertainty of definition
as to severity and prognosis that is entailed in fetal diagnosis, it would lead
to excessive defensive medicine and to an increased number of abortions.
As to the latter, while conditions may differ in France and Great Britain,
we have already noted that abortion is now commonplace in the latter and
any consequent increase would be, at most, insignificant. As to the
former, it has to be remembered that an action for wrongful birth will
almost always be raised in parallel with one for wrongful life and the basic
grounds on which each is argued will be similar.195 Since, as we have
seen, the former is likely to succeed, the seeds of self-protection on the
part of health carers are already sown; opening the door to an action for
diminished life would have no practical effect in this respect.
We are left with a penultimate question which, at the end of a long
chapter, is a hard one to ask – essentially, it reduces to: ‘does it matter?’
The answer, it seems to me, lies, fundamentally, in equity; this, in turn,
depends upon an assessment of the wrong done and this is clearly divis-
ible. The parents have a recognised claim for the emotional and physical
stress196 caused by the negligent birth and the consequent rearing of
a disabled child – this is the true nature of the wrongful birth action.
As a result of the same negligence, the disabled child is suffering and,
conditions being what they are, any attempt to restore him or her to

they illustrate as allowing that, while a cause of the damage is the rubella, the medical
faults may be said to have contributed to it, hence a causal link can be established. The
English courts also seem content to juggle with causation when necessary – e.g. Chester v.
Afshar [2005] 1 AC 134, [2004] 4 All ER 587 for which see Kenyon Mason and Douglas
Brodie, ‘Bolam, Bolam . . . Wherefore Art Thou Bolam?’ (2005) 9 Edinburgh Law Review
298–306, where it is concluded that our causation rules are in something of a state of
flux.
193
‘The function of the law is to enable rights to be vindicated and to provide remedies
when duties have been breached’: Chester v. Afshar, n. 192 above, per Lord Hope at [87].
194
n. 169 above, at 188.
195
See Pearson J in Harbeson, n. 48 above, at 496: ‘[T]he policies which persuade [courts]
to recognise parents’ claims of wrongful birth apply equally to recognition of claims of
wrongful life.’
196
Which may have wider implications. Kennedy and Grubb, for example, point to the fact
that the negligence not only deprives the woman of her choice as to abortion but also
puts a very effective brake on her choice of having another, normal child: Medical Law,
n. 29 above, at 1552.
240 The troubled pregnancy

‘normality’, or the status quo ante negligence, will cost money – and this is
the purpose of the wrongful, or diminished, life action. Since the latter is
not currently available, present practice is to acknowledge that economic
burden by way of the damages payable under the heading of wrongful
birth and, given the fact that the parents will, ultimately, sign the cheques,
this is an understandably practical solution which has stood the test of
time in many jurisdictions. But, is it conceptually correct? My argument
suggests that it is not.
Once again, however, the pragmatist will ask ‘does it matter?’ – and, in
my view, the cases have shown that there are good practical reasons for
believing that it may do. In the first place, in the absence of special circum-
stances, an award to the parents for the upkeep of a child will cease on that
child attaining majority; clearly, as we have already noted,197 this is both
unfair and illogical in respect of the child’s permanent disabilities.
Second, as was stressed in Perruche, not all parents are ideal parents.
The majority of parents will, of course, act as responsible administrators
but they should be no more than that. Equity demands that the child who
is recompensed for disability should be in legal control of his or her
remedial environment; and this, as we have seen, underlies the reasoning
behind the Perruche and Molenaar judgments.
In the event, two persons – the mother and the neonate – have been
injured and there is an acceptable argument for allowing dual actions –
always provided that they are seen as being distinct actions based on
different types of injury that result from a common cause. The difficulty
is, of course, that establishing a commonality of cause involves the use of
what many would regard as paralogic. The alternative, and probably
better, conclusion is that, having eradicated the problem of causation
along the lines that have been suggested above, we should treat both
claims in terms of simple negligence.


197
At p. 98 above.
7 The management of the disabled neonate




Introduction
As Hale LJ said in her memorable speech in Parkinson:1
[T]he invasion of the mother’s personal autonomy does not stop once her body
and mind have returned to their pre-pregnancy state . . . The obligation to provide
or make acceptable and safe arrangements for the child’s care and supervision
lasts for 24 hours a day, seven days a week, all year round, until the child becomes
old enough to take care of himself.
And, if that be true of the normal child – and probably most of us would
agree that it is – how much more does it apply to one who is disabled?
Indeed, this compelling passage from Lady Hale convinces me that a
study of the troubled pregnancy is incomplete without a consideration of
its medico-legally most important aftermath – that is, the management of
congenital disease. Thus, the rationale of this chapter, lies in the belief
that there is a practical, as well as a conceptual, continuum between
pregnancy and early motherhood. Given this premise, however, it will
be appreciated that our remit can legitimately cover only those conditions
which were present in utero or those in which the seeds of disablement
were sown during fetal life – or, put another way, we will be considering
only the child whose disability was foreseeable before he or she was born.
As a corollary, we are not concerned directly with non-congenital diseases
of childhood but we will use such cases when they are needed to illustrate
a relevant point.
Many children suffering from congenital disability will be absorbed
into a happy family relationship; for others, the strain on the family may
be such as to dictate the help of the local authority – but, in either
instance, the child will be cared for and its suffering will be correspond-
ingly reduced. Inevitably, however, there will be some who are beyond
such care and for whom it could be argued that, given the choice, they

1
Parkinson v. St James and Seacroft University Hospital NHS Trust [2002] QB 266, (2001) 61
BMLR 100 at [69].

241
242 The troubled pregnancy

would prefer not to be maintained alive; the troubled pregnancy has
developed into a troubled infancy or, put another way, the wrongful life
hypothetical has become a reality.
And therein lies a major distinction which we have noted throughout
the previous chapter – that, whereas we can only speculate, albeit often on
good evidence, as to the extent of fetal disability, we can usually make an
informed and objective assessment in the case of the disabled neonate.
We have, significantly, introduced a new person into the doctor/patient
equation which, in turn, raises a new, and major, ethical issue. As long
ago as 1982, I wrote:
[I]t becomes clear that, in simple brutal logic, neonaticide2 is scientifically pref-
erable to abortion. Yet, in practice, such a concept is abhorrent and intolerable.3

Which last is an easy thing to say but, in practice, is more difficult to
justify. Certainly, it is not easy to do so by appealing to history. The great
majority of books dealing with this subject will point to the Roman
penchant for abandoning disabled infants and, while we should not be
over influenced by the mores of the Roman ‘civilisation’, there is little
doubt that the practice has, at times, been recognised in many parts of the
world.4 Revulsion was probably fuelled in the United Kingdom by the
extent of child murder in the eighteenth and early nineteenth centuries5
and it was at about this time that the phrase, and the concept of, ‘the
sanctity of life’ – often taken to mean that ‘life’ was always something to
be preserved – became commonplace and well-established within the
medical profession.

2
Although it has been used before in various guises – e.g. to define the killing of a child in
the first 24 hours of its birth – the word as used here is something of a neologism of my own
to imply elective non-treatment of severe congenital disease. I used it so as to distinguish
euthanasia, which involves activity, and infanticide which, in English law, is specifically
defined as the killing of a child less than one year old by its mother when the balance of her
mind was disturbed either by pregnancy or lactation (Infanticide Act 1938); the term is
not so limited in other jurisdictions such as the United States. In Scotland, a similar
offence would be described as child murder which is, paradoxically, treated as culpable
homicide – just as infanticide is dealt with as manslaughter in England.
3
J. K. Mason and R. A. McCall Smith, Law and Medical Ethics (London: Butterworths,
1982) at 88.
4
For a full, and sometimes hair-raising, exposition, see the classic work in this area: Robert
F. Weir, Selective Non-treatment of Handicapped Newborns (New York: Oxford University
Press, 1984), chapter 1.
5
Specific statutory prohibition of concealment of birth dates, in Scotland, from the still
extant Concealment of Birth (Scotland) Act 1809 though there was earlier legislation in
England dating from 1624. I have touched on the subject in Medico-legal Aspects of
Reproduction and Parenthood (Aldershot: Ashgate, 2nd edn 1998), chapter 14. For fuller
reviews see Katherine O’Donovan, ‘The Medicalisation of Infanticide’ [1984] Criminal
Law Review 259–64; Mark Jackson, ‘Infanticide: historical perspectives’ (1996) 146 New
Law Journal 416–20.
Management of the disabled neonate 243

The sanctity of life
It would be purely speculative to attempt to identify the origin of the
phrase or to say how it became so intimately attached to life and death
decision making. It is generally regarded as a religious tenet, and is
certainly ingrained in orthodox Judaism,6 although it has been said that
there is no scriptural basis for placing an absolute value on life itself.7
This, of course, is not to say that we should not place an extremely high
value on human life and there is no doubt that the law in this area will
always start from a preference for life over death. This is probably a
statement of the obvious but a single quotation will not be out of place:
[T]he court’s high respect for the sanctity of human life imposes a strong pre-
sumption in favour of taking all steps capable of preserving it, save in exceptional
circumstances.8
but, it was added, ‘the problem is to define those circumstances’ – and
that, in turn, defines the purpose of this chapter.
At base, the problem lies in the interpretation of the word ‘sanctity’
which, on the face of things, is an absolute term which many would
equate with ‘inviolability’. Those who do so would understand the ‘sanc-
tity of life’ to mean ‘the sanctity of life at any price’ which would,
consequentially, dictate providing maximum treatment aimed at preser-
vation of life irrespective of the quality of that life and of the adverse
effects of aggressive therapy. This attitude, commonly known as vitalism
or absolutism, was probably widely adopted in the Western world in the
late nineteenth and early twentieth centuries and was tenable in that, on
the one hand, relatively few severely disabled infants survived birth and,
on the other, invasive and aggressive treatments capable of preserving
disabled life were barely available; the problem of ‘to treat or not to treat’
the disabled neonate was, thereby, self-contained – in short, doing ‘every-
thing that could be done’ resulted in not much being done at all.
The movement away from vitalism, which evolved fairly rapidly in the
first half of the twentieth century was encouraged by two main develop-
ments. The first was in the field of philosophy where the concept of
‘personhood’ was widely canvassed. The gist of this is that a human
being does not become a human person – and, thus, command the
respect due to a human person – until he or she has developed the

6
See Re C (medical treatment) [1998] 1 FLR 384, (1997) 40 BMLR 31, discussed at p. 263.
7
For example, Kenneth Boyd, ‘Euthanasia: Back to the Future’ in John Keown (ed.),
Euthanasia Examined (Cambridge: Cambridge University Press, 1991), chapter 7.
8
Re J (a minor)(wardship: medical treatment) [1991] Fam 33, (1990) 6 BMLR 25 per Taylor
LJ at Fam 53, BMLR 40.
244 The troubled pregnancy

intellectual capacity to exercise the rights of such a person.9 Thus, abor-
tion, neonaticide and infanticide in its wider sense are on a par. The
dangers of such a construct – which commanded considerable, if only
temporary, support at the time – are, I believe, self-evident and, as things
stand, such a philosophy is unlikely to be adopted by the courts of any
developed countries. Which, of course, does not mean it may not be
revivified at some time.

The quality of neonatal life
Far more significant in the present context were developments in the
practical world of neonatology where the work of Lorber, who had
pioneered aggressive surgical treatment of spina bifida,10 was particularly
influential. A retrospective review of his results later convinced him that
many of his cases were living lives of unacceptably poor and painful
quality and he subsequently campaigned vigorously for non-treatment
in many cases in the interests of the individual sufferers.11 Quite clearly,
these views were being widely accepted; by 1986 it was being openly
reported that up to 30 per cent of deaths in neonatal intensive care
units followed the deliberate withdrawal of life support12 and this may,
now, be an underestimate.13 In a way, this is not so surprising as might
appear insofar as infants must be extremely ill to be admitted to intensive
care and death will have been inevitable in many cases. There are, how-
ever, a number of points to be gleaned from such figures. First, it is clear
that the concept of ‘futility’ is now well accepted, despite the fact that its
definition is imprecise; I will return to this problem shortly. Second, since

9
This theory was particularly developed by Michael Tooley, ‘In Defense of Abortion and
Infanticide’ in J Feinberg (ed.), The Problem of Abortion (Belmont: Wadsworth, 1973)
83–114 and later elaborated by Singer. See, Helga Kuhse and Peter Singer, Should the
Baby Live? (Oxford: Oxford University Press, 1985).
10
J. Lorber, ‘Ethical Problems in the Management of Myelomeningocele’ (1975) 10
Journal of the Royal College of Physicians of London 47–60.
11
J. Lorber and S. A. Salfield, ‘Results of Selective Treatment of Spina Bifida Cystica’
(1981) 56 Archives of Disease in Childhood 822–30.
12
Andrew Whitelaw, ‘Death as an Option in Neonatal Intensive Care’ (1986) 328 Lancet
328–31; C. H. Walker, ‘. . . Officiously to Keep Alive’ 63 Archives of Disease in Childhood
560–6. For a general review, see A. G. M. Campbell and H. E. McHaffie, ‘Prolonging
Life and Allowing Death: Infants’ (1995) 21 Journal of Medical Ethics 339–44.
13
Ian M. Balfour-Lynn and Robert C. Tasker, ‘Futility and Death in Paediatric Medical
Intensive Care’ (1996) 22 Journal of Medical Ethics 279–81 reported that two-thirds of the
deaths in their very prestigious ICU resulted from limitation of treatment or withdrawal
of mechanical ventilation. It is to be noted that the unit was paediatric rather than
neonatal. The authors withheld the precise years of their study, leaving one to speculate
as to the importance of the clarification of the law in the early part of the decade which is
discussed in detail at p. 262.
Management of the disabled neonate 245

only a minute number of such cases come to court, the vast majority of
these decisions must be reached on the basis of agreement between the
health care team and the parents – and it is almost impossible to over-
emphasise the importance of involving the ‘team’, as opposed to the
physician in charge, in the decision-making process. Third, and for
much the same reason, it can be assumed that the law recognises the
rights of the parent–health carers combination to make such decisions.14
Finally – and, perhaps, most significantly – the number of such reports
indicates that the ‘sanctity of life’ doctrine as a measure of good medical
practice is now a matter of past history. And the law has followed the
trend – as Lord Donaldson said in the basic case of Re J, ‘the absolutist
approach [is one] which I would in any event unhesitatingly reject’.15

Principles of management of severe congenital disease
What, then, is to replace it? In my view, there are two overarching
concepts which govern the withholding or withdrawal of treatment
from disabled neonates16 – medical futility and the patient’s best inter-
ests. These can be translated in practical terms as, on the one hand, the
effect of treatment as objectively recognised and, on the other, as the
benefits to the patient.17 It is, however, inevitable that the two will
overlap – and this is important in that the effect of a treatment is
something that can properly be assessed by the medical profession,
while the latter is a matter for the competent patient, for the child’s
parents or guardians or, in default of either, for the courts; it will be seen
as we progress that the great majority of disputed cases derive from a
conflicting interpretation of the position as seen from the medical and
parental viewpoints.

14
‘[A] proper acknowledgement of the law [is] that parents, by virtue of ss. 2 and 3 of the
Children Act 1989, hold parental responsibility; that includes the right to consent to or
refuse treatment.’ Per Hedley J in Re Wyatt (a child) (medical treatment: parents’ consent)
(2004) 84 BMLR 206 at [16]. See also Sir Mark Potter P in Re K, n. 227 below at [42].
15
n. 8 above, at Fam 44 BMLR 32.
16
It is, perhaps, unnecessary to re-emphasise that we are not concerned at this point with
the positive killing of such infants which is unlawful and to which we will return at the end
of the chapter. We are reminded of the words of Lord Mustill: ‘If an act resulting in death
is done without lawful excuse and with intent to kill it is murder. But an omission to act
with the same result and the same intent is in general no offence’ – Airedale NHS Trust v.
Bland [1993] 1 All ER 821 at 890, (1992) 12 BMLR 64 at 137. For discussion of the
moral dubiety of the law in this area, see Raanan Gillon, ‘Euthanasia, Withholding Life-
prolonging Treatment, and Moral Differences between Killing and Letting Die’ (1988)
14 Journal of Medical Ethics 115–17.
17
See L. J. Schneiderman and N. Jecker, ‘Futility in Practice’ (1993) 153 Archives of
Internal Medicine 437–41.
246 The troubled pregnancy

Medical futility
Of course, the very word ‘futility’ carries its own complexities and contra-
dictions and there is great force in Gillon’s rejection of the term as a guide
to decision making on the grounds that it is ‘ambiguous, complicated and
distressing’.18 This is not the place for a major discussion of the philo-
sophical issues involved – these can, in themselves, occupy a book at least
as large as this.19 My conclusion is that, if we are to retain the term – and
at least some of the difficulties, including its potential rejection on reli-
gious grounds,20 are removed if we substitute that of ‘non-productive
treatment’ – we should restrict it in the present context to medical futility,
for that is what the doctor has the expertise to assess. The definition
provided by Schneiderman and Jecker is as useful as any:
A treatment which cannot provide a minimum likelihood or quality of benefit should
be regarded as futile and is not owed to the patient as a matter of moral duty.21


The ‘best interests’ test
The concept of ‘best interests’ is closely bound to the welfare principle
which originated in and dictated the governance of wardship22 – to quote
Thorpe LJ: ‘There can be no doubt in my mind that the evaluation of best
interests is akin to a welfare appraisal.’23 We will see later that the concept
of ‘best interests’ has come to dominate judicial thinking in all areas in
which the courts are asked to settle disputes as to the management of
incompetent patients – so much so that other approaches to the solution
of the problems raised are, now, rejected not so much as a matter of

18
Raanan Gillon, ‘ ‘‘Futility’’ – Too Ambiguous and Pejorative a Term?’ (1997) 23 Journal
of Medical Ethics 339–40.
19
Such a work is Marjorie B. Zucker and Howard D. Zucker (eds.), Medical Futility
(Cambridge: Cambridge University Press, 1997).
20
Since the rigid sanctity of life doctrine is commonly associated with Roman Catholicism,
it is well to remember the words of Pope Pius XII:
Man has a right and a duty in case of severe illness to take the necessary steps to preserve
life and health . . . But he is obliged at all times to employ only ordinary means . . . that is to
say those means which do not impose an extraordinary burden on himself or others.
(1957) 49 Acta Apostolicae Sedis 1027.
21
n. 17 above.
22
Wardship is no longer a function of the courts by virtue of the Children Act 1989. Appeal
may be made, however, to the inherent jurisdiction of the court which is retained by
s.100. Alternatively, a treatment dispute can be brought to the court as a specific issue
and the court can provide a specific issue order (s.100(3)).
23
In Re A (medical treatment: male sterilisation) [2000] 1 FLR 549 at 560. The fact that Re A
was concerned with an adult incompetent is immaterial.
Management of the disabled neonate 247

preference but, rather, are being virtually condemned as lying ‘out of
bounds’. A single example will suffice to show the extent of the shift of
emphasis. A quarter of a century ago in Re B (a minor)(wardship: medical
treatment),24 to which we will return, Templeman LJ implied that the
watershed for non-treatment of disabled neonates should be that life was
going to be ‘so awful that in effect the child must be condemned to die’
while Dunn LJ used the yardstick that ‘the child’s life is likely to be an
intolerable one’. By 2005, however, that view had been rejected on a
number of occasions and was firmly laid to rest by the Court of Appeal
decision in Wyatt v. Portsmouth Hospital.25 We will return to this impor-
tant jurisprudential question in greater detail in discussion of that case
later in this chapter.
How, then, will the court attempt to evaluate the child’s best interests?
We must turn, again, to Lord Donaldson in Re J where he laid down what
have since become the ground rules by way of reference to the earlier case
of Re B:26
Re B seems to me to come very near to being a binding authority for the propo-
sition that there is a balancing exercise to be performed in assessing the course to
be adopted in the best interests of the child. Even if it is not, I have no doubt that
this should be and is the law.27
And he went on to say: ‘[A]ccount has to be taken of the pain and
suffering and quality of life which the child will experience if life is
prolonged. Account has also to be taken of the pain and suffering involved
in the proposed treatment itself.’ And finally, having paid full respect to
the sanctity of human life, he rejected the vitalist doctrine:
But in the end there will be cases in which the answer must be that it is not in the
interests of the child to subject it to treatment which will cause increased suffering
and produce no commensurate benefit, giving the fullest possible weight to the
child’s, and mankind’s, desire to survive.28

So far, so good. But it is appropriate to take a small diversion at this point
and consider that part of Lord Donaldson’s speech which is open to
criticism but which is of considerable conceptual importance.
Discussing how this balancing exercise is to be formulated, he quoted,
with approval, the Canadian Justice McKenzie:
It is not appropriate for an external decision-maker to apply his standards of what
constitutes a liveable life and exercise the right to impose death if that standard is


24
[1982] 3 FLR 117, [1981] 1 WLR 1421.
25
Re Wyatt (a child) (medical treatment: continuation of order) (2005) 86 BMLR 173, CA.
26
n. 24 above. 27 Re J, n. 8 above, at BMLR 34. 28 ibid., at Fam 44, BMLR 35.
248 The troubled pregnancy

not met in his estimation. The decision can only be made in the context of the
disabled person viewing the worthwhileness or otherwise of his life in its own
context as a disabled person – and in that context he would not compare his life
with that of a person enjoying normal advantages. He would know nothing of a
normal person’s life having never experienced it.29
To my mind, this is a very clear expression of what is known as the
‘substituted judgment’ test for treatment of the incompetent. This test,
which is widely used in the courts of the United States, has been defined
as ‘donning the mental mantle of the incompetent’30 – or, essentially,
reading the patient’s mind.
I confess to being in the minority in preferring the ‘substituted judgment’
to the ‘best interests’ test in that the former attempts to preserve respect for
the personality of the patient while the latter is blatantly paternalistic. The
majority argument to the contrary is, of course, that there should be some
evidence of the patient’s intentions when competent before a substituted
judgment can be meaningfully applied – and this condition is impossible to
fulfil in the case of a young child. My counter to this lies in suggesting that
we would, in fact, be substituting the judgment of the reasonable child
given the same circumstances. This, admittedly, comes very close to pro-
posing a distinction without a difference and it is true that, in practice, the
two tests reach the same conclusion in the great majority of cases.31 This,
however, may not be entirely true and we will revert to the point when
discussing Dr Arthur’s case below. Nonetheless, the English courts are
imbued with the welfare principle and have consistently repudiated the
substituted judgment test32 since the House of Lords decision in Re F.33
Not only will the courts regularly apply the best interests test but they
are, to an extent, jealous of its interpretation. The opinions of the inter-
ested parties are no more than factors in the balancing equation – some-
thing that has been made very clear in the Family Court and in the Court
of Appeal under the influence of Lady Butler-Sloss. Thus, we have
Thorpe LJ:


29
Superintendent of Family and Child Services and Dawson (1983) 145 D LR (3d) 610 at 620
quoted in Re J, n. 8 above, at Fam 44, BMLR 32.
30
Superintendent of Belchertown State School v. Saikewicz 370 NE 2d 417 (Mass., 1978).
31
In passing, this may not apply in the case of the adult who has completed an advance
directive. When it comes to decision time, his or her advance rejection of treatment may well
be at odds with what can be seen objectively as his or her best interests. The advance
directive is, however, now binding in England and Wales (Mental Capacity Act 2005, s.26).
32
So much so that we find Brooke LJ being convinced of ‘a danger of detecting a substituted
choice test [in a quoted passage]’ (my emphasis): W Healthcare NHS Trust v. KH [2005]
1 WLR 834, CA at [26]. In the same case, however, the court appeared to regret the non-
availability of the test (at [23]).
33
Re F (mental patient: sterilisation) [1990] 2 AC 1.
Management of the disabled neonate 249

In deciding what is best for the disabled patient the judge must have regard for the
patient’s welfare as the paramount consideration. This embraces issues far wider
than the medical . . . In my opinion Bolam34 has no contribution to make to [the]
second and determinative stage of the judicial decision.35
with Butler-Sloss P confirming:
[B]est interests is wider in concept than medical considerations . . . In my judge-
ment best interests encompasses medical, emotional and all other welfare issues . . .
It therefore falls to the judge to decide whether to accept or reject the expert medical
opinion.36

One further commentary on the best interests test must be quoted
because of the importance that has been attached to it in later cases:
[I]t seems to me that the first instance judge with a responsibility to make an
evaluation of the best interests of a claimant lacking capacity should draw up a
balance sheet. The first entry should be of any factor or factors of actual benefit . . .
Then on the other sheet the judge should write any counterbalancing dis-benefits
to the applicant . . . Then the judge should enter on each sheet the potential gains
and losses in each instance making some estimate of the extent of the possibility
that the gain or loss might accrue. At the end of that exercise the judge should be
better placed to strike a balance between the sum of the certain and possible gains
against the sum of the certain and possible losses.37
All of which may look like little more than sound common sense but
which, nevertheless, now has immense jurisprudential significance.
Effectively, in the event of dispute involving treatment of a child against
the wishes of its parents, it is only the application of the best interests test
that separates a lawful court decision from a breach of the child’s human
rights to his or her bodily integrity that are subsumed under Article 8 of
the European Convention on Human Rights and incorporated in the
Human Rights Act 1998, schedule 1.38


34
Bolam v. Friern Hospital Management Committee [1957] 2 All ER 118, (1957) 1 BMLR 1.
We have discussed this standard test for medical negligence and its evolution in
Chapter 1.
35
Re S (adult patient) (sterilisation) [2001] Fam 15, (2000) 55 BMLR 105 at 119.
36
n. 35 above, at Fam 24, BMLR 113. See also, Dyson LJ speaking for the court in R (on the
application of N) v. Doctor M and others [2003] 1 FLR 667, (2003) 72 BMLR 81 at [29]:
‘[T]he fact that there is a responsible body of opinion against the proposed treatment is
relevant to the question whether it is in the patient’s best interests or medically necessary,
but it is no more than that’. Once again, the fact that these cases were all dealing with
adult incompetents is immaterial to the concept.
37
Re A (medical treatment: male sterilisation) [2000] 1 FLR 549 per Thorpe LJ at 560.
38
Glass v. United Kingdom [2004] 1 FLR 1019, (2004) 77 BMLR 120. For extended
commentary on this important case, see Richard Huxtable and Karen Forbes, ‘Glass v.
UK: Maternal Instinct v. Medical Opinion’ (2004) 16 Child and Family Law Quarterly
339–54.
250 The troubled pregnancy

Envoi. Finally, as a conclusion to this introduction to the law, we
should note that Butler-Sloss P has recently found no difficulty in com-
bining and reconciling the concepts of medical futility and the best
interests of the disabled child. Re L concerned a child aged 9 months
who suffered from Edwards’ syndrome – a normally rapidly fatal chro-
mosomal disease; the disputed problem was whether or not mechanical
ventilation should be provided in the event of respiratory failure. The
President summarised her position:
[T]he test is ‘best interests’ which are interpreted more broadly than ‘medical
interests’ and include emotional and other factors. There is a strong presump-
tion in favour of saving life, but not where treatment would be futile, and there is
no obligation on the medical profession to give treatment which would be
futile.39
One could have wished that Her Ladyship had used the term medical
futility because, as has been intimated above, the definition of futility
when unqualified depends so much on one’s viewpoint.40 To give what
may seem an over-harsh example, facial movement in a brain-damaged
infant may be, to the health carer, no more than a reflex muscular
contraction that is irrelevant to an assessment of the child’s condition;
to the parents, it may be interpreted as a smile that is worth preserving at
all costs. Even so, in the broad context of the case, Butler-Sloss P, who
reverted with strong approval to Lord Donaldson in Re J,41 can be
interpreted as placing medical futility firmly in the ambit of Thorpe LJ’s
itemised balance sheet within which it will play a very significant role in
the assessment of the patient’s best interests.


The British cases
The particular intention of this review of some of the relevant British
cases is to identify any evident trend that is being adopted by the courts
in their decision-making. First, however, we must dispose of an inte-
resting anomaly – that is, that, in practice, so few cases involving the


39
Re L (medical treatment: benefit) [2005] 1 FLR 491 at [12].
40
In my view, the best case illustrative of this conflict is R v. Cambridge Health Authority,
ex p B [1995] 2 All ER 129, CA in which the extended treatment of a child with
leukaemia, carrying a possible 2–10 per cent chance of success, was resisted by the
Authority but regarded as essential by the parents. The difference in approach between
the trial judge and the Court of Appeal, together with the interposition of problems of
resource allocation, are particularly interesting. The nature of the case, however, in not
being one of congenital disease, puts it beyond the parameters of the present discussion.
41
n. 8 above.
Management of the disabled neonate 251

management of congenital disease come to the courts when compared
with the apparently large number of agreed non-treatment decisions
which are taken in neonatal intensive care units without the need for
judicial intervention, a matter to which attention has already been drawn
(at p. 244).42
Hypothesis is a dangerous exercise but I suspect that, in the great
majority of cases that give rise to doubts as to their correct manage-
ment, the infant either goes home with the family and is cared for
lovingly within the domestic ambience or is treated in hospital for
varying lengths of time with full agreement between the parents and
the health carers. In a minority of these cases, however, the health
carers will, with time, begin to appreciate the increasing futility of
their therapeutic efforts, no matter how great may be their dedication
while, simultaneously, bonding between the parents and their child
matures. As a result, a tension develops which, again, may often be
resolved. But there remains a mercifully small residue of cases in which
an agreed management plan becomes increasingly less possible and
recourse to the courts is inevitable. The practical results are two-fold.
In the first place, this process, if it occurs, takes time and, as a result,
the majority of relevant cases, in fact, concerns infants rather than
neonates. Secondly, and as a direct consequence, the vast majority of
cases will be brought by the health carers wishing to withhold or
terminate treatment; it is relatively unusual for the parents to attempt
to prevent the use of life sustaining treatment43 save in the well-known
instance of doctrinaire religious objection brought, predominantly, by
Jehovah’s Witnesses.44



42
The number is now very considerable. Most recently, relevant discussions with parents
are said to occur in some 70 per cent of deaths in neonatal ICU’s: Hazel McHaffie et al.,
Crucial Decisions at the Beginning of Life (Oxford: Radcliffe Medical Press, 2001).
43
Cf. the less uncommon situation in respect of adults – e.g. W Healthcare NHS Trust v.
KH, n. 32 above. This, among several others, was a reason given for advocating ‘caution
in the application to children of factors relevant to the treatment of adults’ in Re Wyatt
(a child) (medical treatment: continuation of order) (2005) 86 BMLR 173 at [90] – although
some general statements of principle can plainly apply to both.
44
Such cases will seldom relate to congenital disease and are, therefore, outwith our remit.
A useful recent article is by Osamu Muramoto, ‘Bioethical Aspects of the Recent
Changes in the Policy of Refusal of Blood by Jehovah’s Witnesses’ (2001) 322 British
Medical Journal 37–9 and, for a comparative view of the law, S. Woolley, ‘Children of
Jehovah’s Witnesses and Adolescent Jehovah’s Witnesses: What are their Rights?’ (2005)
90 Archives of Disease in Childhood 715–19. There are, of course, other religious groups
opposed to medical interference which attract less public attention. Modern cases have
involved Christian Scientists and Rastafarians (Diana Brahams, ‘Religious Objection
versus Parental Duty’ (1993) 342 Lancet 1189–90).
252 The troubled pregnancy

Exceptions will, however, occur and Hedley J has recently provided a
most useful, albeit said to be tentative, classification of those cases which
come, or may come, to court.45 He identified four variations:
(i) Where a doctor advocated a treatment which the parents resisted
and a failure to administer such treatment would be an affront to that
doctor’s conscience;
(ii) Where a doctor advocated treatment which the parents resisted on
grounds that, whilst reasonable, were contrary to the clinician’s
view;
(iii) Where the parents wanted treatment, which the clinician could not
advise, but the giving of which would not be an affront to conscience;
(iv) Where giving the treatment requested would be an affront to
conscience.
As the judge pointed out, the vast majority of disagreements will fall
within categories (ii) and (iii). The precise categorisation of individual
cases is, admittedly, often a subjective exercise; nevertheless, his analysis
affords a convenient template on which to build a collage of the British
cases and, although it may involve a number of apparent diversions,
I propose to do so rather than follow a strict chronological sequence.
Even so, I believe it would be useful, first, to isolate what I regard as the
‘original’ cases that arose in 1981.

The 1981 cases
I have separated these cases as a pair, first, because they came to notice at
much the same time and were, together, responsible for bringing the
problems of the disabled neonate into the public domain.46 Second,
because the marked contrast between them virtually laid down the ground
rules for the later extensive litigation in the field. And, thirdly – and not
least – because they serve to illustrate the remarkable change in medical and
lay attitudes to disability that has evolved over the last quarter of a century.
Re B (a minor) (wardship: medical treatment)47 was a case with a turbu-
lent history that demonstrates, inter alia, the confusion among medical

45
In Re Wyatt (a child) (medical treatment: parents’ consent) (2004) 84 BMLR 206 at [18].
I have, however, used the judge’s revised wording in Re Wyatt (2005) 87 BMLR 183
at [30].
46
I have compared the two cases previously in J. K. Mason and David W. Meyers, ‘Paren-
tal Choice and Selective Non-treatment of Deformed Newborns: A View from
Mid-Atlantic’ (1986)12 Journal of Medical Ethics 67–71. For a recent overview, see
R. J. Boyle, R. Salter and M. W. Arnander, ‘Ethics of Refusing Parental Requests to
Withhold or Withdraw Treatment from their Premature Baby’ (2004) 30 Journal
of Medical Ethics 402–5.
47
[1990] 3 All ER 927, [1981] 1 WLR 1421.
Management of the disabled neonate 253

practitioners as to the law at that time. Baby B was, unexpectedly, born
with Down’s syndrome complicated by intestinal atresia or blockage. It is
important to note that, while death was inevitable in the absence of a
reparative operation, the surgery of itself was a fairly routine procedure
which, as was said at the time, would have been carried out as a matter of
course in the case of a child who was otherwise normal; nonetheless, there
was a conflict of opinion between the obstetricians and the paediatric
surgeons – particularly in relation to the likelihood of post-operative
cardiac complications.48 In any event, while the surgeons were willing
to operate, the parents ‘did not wish to take the responsibility in the future
for the baby if the operation took place’ and refused their consent – a
decision which Dunn LJ was later to regard as one which ‘everybody
accepts was an entirely responsible one’.49
Faced with an apparently emergency application, Ewbank J gave care
and control to the local authority together with leave for the operation to
proceed. Even so, the surgeons, apparently unaware of the extent of the
court’s jurisdiction, refused to operate and the case came up for further
review four days later.50 However, just as he was about to confirm his
order, the judge decided – with, it appears, full justification – that the
parents had not been adequately involved and the case was reopened.
Essentially, the parents’ position could be summed up as their believing
that God or nature had ‘given the baby a way out’ and they asked the
court to respect their wishes that surgery should not be undertaken.
Ewbank J, who was committed to a decision based on the best interests
of the child, was, however, able to subsume the parents’ rejection of B
within those interests and, in a remarkable volte face, determined that, on
balance, the parents’ decision was correct and was in the interests of the
child.
Re B, of course, went to appeal but, before following the direct line,
I propose changing course and, first, considering the case of R v. Arthur51
which was heard some three months after Re B. In so doing, both the
similarities and contrasts of the two cases become more easily appreciated.


48
The judge at first instance was strongly influenced by one expert opinion that the risk of
heart disease following the operation was normally 33 per cent but was double this in the
case of mongoloid children. ‘Therefore’, he said, ‘although the surgery itself is acceptable
in an ordinary case, there are risks beyond the normal for a child with this mental
disability.’ To refuse the life-saving operation on these grounds appears to this writer to
be a non sequitur of remarkable proportions.
49
n. 47 above, at All ER 929, WLR 1424.
50
Meantime, the local authority had not taken up the proffered chance of an operation at an
alternative hospital.
51
(1981) 12 BMLR 1, Crown Ct.
254 The troubled pregnancy

Baby John Pearson was, like baby B, unexpectedly found to be
suffering from Down’s syndrome when he was born and, as in the
case of baby B, his parents rejected him.52 The essential difference
was that, whereas B had a physical complication that was potentially
fatal, J was, to all appearances, anatomically normal; at the time of his
rejection, he could anticipate the customary life span of a Down’s
syndrome person of some 20 to 30 years. Dr Arthur, as the consultant
in charge, saw him some 4 hours after his birth and, after discussion
with his mother – the details of which are unrecorded – wrote in the
notes: ‘Parents do not wish the baby to survive. Nursing care only.’
Although there was some doubt among the staff as to the meaning of
the latter phrase, it was generally assumed to mean that the baby was to
be comforted and hydrated; he was not to be resuscitated in the event
that infection supervened. Dr Arthur also prescribed the sedative drug
DF118 (dihydrocodeine), presumably in an effort to limit the child’s
suffering from the effects of withholding nutrition. The dose pres-
cribed, and the amount actually given, were, naturally, discussed at
length during the trial. Suffice it to say, here, that the levels discovered
in the tissue at post-mortem examination were very much higher than
had been authoritatively reported as normal therapeutic concentra-
tions. John Pearson died 69 hours after his birth, the cause of death
being recorded following post-mortem examination by a duo of for-
ensic and paediatric consultant pathologists as: Multilobular pneu-
monia due to lung stasis due to dihydrocodeine poisoning in an infant
with Down’s syndrome.53 Dr Arthur was indicted for murder but,
during the trial, further evidence was brought which indicated that
John Pearson was not as physically sound as was first thought and
that he might have died irrespective of the therapeutic regime to
which he was subjected. The charge of murder was, therefore, with-
drawn from the jury and Dr Arthur was, in the end, found not guilty of
attempted murder.
This book is not about criminal law. Nonetheless, I feel as strongly
about the Arthur case now as I did a quarter of a century ago and I cannot
resist repetition of Farquharson J’s definition of an attempt:
[F]or an act to amount to an attempt it must be one which is immediately
connected with the crime which it is intended to be committed . . . To be an

52
It was written in the notes: ‘Mum feels he will be a strain on the family and her daughter
[and] is not anxious to keep him’ (ibid., at BMLR 7). The insertion is mine – without it,
the statement is even more bizarre and its omission must have been an error. John’s
mother was also reported as saying to her husband: ‘I don’t want it, duck’ (ibid.).
53
It is interesting that the forensic pathologist maintained his diagnosis of poisoning even
after re-examination in the light of the further evidence adduced at the trial.
Management of the disabled neonate 255

attempt the act must be so closely connected with the crime itself that anybody
would regard the person concerned as trying to commit it54
which seems to me to describe the association between withholding
nutrition from a baby and causing its death fairly adequately.
Be that as it may, it is of no present concern. Rather, I suggest there are
three areas of social significance that are highlighted by these two first
instance cases. The first is the remarkable deference shown by the courts
to the medical profession in this era. Thus, we have Farquharson J saying,
in his charge to the jury, first:
[T]he President of the Royal College of Physicians, with his colleagues, has a
considerable say in the ethics of this profession. And so what he has to tell you, if
you accept it, and I can think of no reason why you should not, must carry great
weight55
and, later:
[W]hatever a profession may evolve as a system of standards of ethics, it cannot
stand on its own, and cannot survive if it is in conflict with the law . . . But, I
imagine that you will think long and hard before deciding that doctors, of the
eminence we have heard, representing to you what medical ethics are, and
apparently have been over a period of time in that great profession, have evolved
standards which amount to committing crime.56
Which, despite the original demurrer, seems to come perilously close to
inviting the tail to wag the dog.
The second area of interest lies in its corollary – that is, the easy
acceptance by the law of the medical profession’s self-regulated role as
arbiter of life and death. We have already noted the large number of
deaths in neonatal intensive care units attributed to withdrawal of support
and this was acknowledged, albeit on the smaller scale of 13 per cent, by
Professor Campbell.57 The difficulty in Dr Arthur’s case is, of course,
that the patient was not in intensive care and, indeed, so far as the staff
were concerned at the time, he required no treatment other than normal
baby care which must surely include nutrition. A policy based on the
provision of intensive care was, thus, being applied in a wholly different
ambience. The opinion of Sir Douglas Black sums up the resulting
confusion:
Where there is an uncomplicated Down’s case and the parents did not want the
child to live, the child requires normal, healthy care, but I think there are circum-
stances where it would be ethical to put it on a course of management that would


54 55 56
ibid., at BMLR 2. ibid., at BMLR 20. ibid., at BMLR 22.
57
ibid., at BMLR 15.
256 The troubled pregnancy

end in its death . . . I say that with a child suffering from Down’s and with a
parental wish that it should not survive, it is ethical to terminate life, providing
other considerations are taken into account.58
And, as we have seen, Farquharson J accepted this, and other evidence in
the same vein, without criticism. Which is, in some ways, surprising – in
my view, the greater part of the expert evidence provided in the case is so
full of contradictions and dissimulations as to defy logical analysis.
The third feature common to both Arthur and Re B at first instance that
I find difficult to accommodate is the insouciance with which both courts
were able to accept the apparent ‘right’ of parents to abandon their
disabled children. Perhaps there is an element of force majeure involved
for it is difficult to see how it is possible to compel a couple to care for a
child they do not want. Although care is all the uncomplicated Down’s
syndrome child requires, it may, nonetheless, be demanding and, in the
end, the use of compulsion of any sort on reluctant parents may certainly
not be in the child’s best interests. Criminal sanctions, say, by way of the
Children and Young Persons Act 1933, s.1 (or the Children and Young
Persons (Scotland) Act 1937) may serve to satisfy the public conscience
but the abandoned child still remains in the arms of the local authority
irrespective of what happens to its parents – and it is, in any event,
arguable that for the parents to hand a child over to health or social carers
does not constitute abandonment. Much the same is true of the applica-
tion of the family law, for example, by the grant of a care and supervision
order under the Children Act 1989, s.31 – for better or for worse, the
child is still subject to institutional care. The insistence by Ewbank J on
the ‘reasonableness’ of the parents’ decision to let their child die, coupled
with Dunn LJ’s later description of it as being ‘entirely responsible’,59 and
Farquharson J’s condemnation of any criticism of a conscious decision to
reject a mongol baby, may leave one wondering as to the strict legal
position – but, in the end, it may be that a laissez faire attitude is the
best approach to the inevitable conclusion that good parenting cannot
be enforced.60


58
ibid., at BMLR 21. 59 In the Court of Appeal in Re B, n. 47 above, at WLR 1424.
60
The problem of the apparent use of adoption as the ideal solution lies in its uncertainty
and the cases illustrate this well. The local authority was confident that, given she lived, B
could be provided with a good adoptive environment; Ewbank J, however, appeared
reluctant to put adoptive parents to the test – ‘there are bound to be strains and problems
in any family bringing up a mongol child and consideration must be given to that factor’
(1982) 3 FLR 117. Farquharson J actually used the remoteness of the likelihood of ‘the
child ever being taken into another family either by adoption or fostering’ as a partial
reason why John Pearson should have been allowed to die (n. 51 above, at BMLR 5). The
doctors will also take into consideration the likelihood of adoption when making their
Management of the disabled neonate 257

Which might seem a tenable, albeit mellifluous, conclusion until we see
the Attorney-General in Parliament less than one year later:
I am satisfied that the law relating to murder and to attempted murder is the same
now as it was before the trial . . . and that it is the same irrespective of the wishes of
the parents or any other person having a duty to care for the victim.61
It is as well that, although not referred to at the Arthur trial,62 Re B went to
appeal and we can now return to that case.
The local authority appealed against the trial judge’s decision ‘that
nature ought to be allowed to take its course’, once it became clear that
some surgeons advised that B should be treated and were prepared to
proceed with the operation. Templeman LJ set out the options starkly in
the Court of Appeal. Without surgery, B would die within a matter of
days. Given that she had the operation, there was a possibility that she
would suffer from heart disease and die within months. If, however, she
survived the operation, she would live as a mongoloid child for some 20 to
30 years – in which case, no-one could say to what extent her handicaps
would be apparent; even so, in what appears to be a contradictory state-
ment, the Lord Justice held it as certain that she would be ‘very severely
mentally and physically handicapped’.63 Pointing out that the ‘decision’
of the parents and the doctors was, now, no more than part of the
evidence available, Templeman LJ went on to make his legendary judg-
ment which, despite the doubts as to its authority that have been
expressed recently (see p. 258 below), still merits repetition in full:
[A]t the end of the day it devolves on this court in this particular instance to decide
whether the life of this child is demonstrably going to be so awful that in effect the
child must be condemned to die, or whether the life of this child is still so
imponderable that it would be wrong for her to be condemned to die. There
may be cases, I know not, of severe proved damage where the future is so certain
and where the life of the child is so bound to be full of pain and suffering that the
court might be driven to a different conclusion, but in the present case the choice
which lies before the court is this: whether to allow an operation to take place
which may result in the child living for 20 or 30 years as a mongoloid or whether


life or death decisions (see Professor Campbell, ibid., at BMLR 16) – though how the
prolonged negotiations associated with adoption are compatible with non-feeding as a
‘holding operation’ is not easy to understand.
61
Official Reports, March 1982, Written answers, cols. 348–9.
62
Although Farquharson J made it clear that he would have supported the first instance
decision in Re B at least passively (see evidence of Professor Campbell, n. 51 above, at
BMLR 17).
63
The easy acceptance of a range of options indicates that the courts – and, presumably,
society – had, at this time, abandoned any principle based on the ‘sanctity of life’ and had
entered the far less certain domain of the quality of life. Indeed, this is implicit in the
reliance on parental wishes and medical advice shown in Arthur and Re B at first instance.
258 The troubled pregnancy

(and I think this must be brutally the result) to terminate the life of a mongoloid
child because she also has an intestinal complaint. Faced with that choice I have
no doubt that is the duty of this court to decide that the child must live.64
In criticising the trial judge’s reliance on the wishes of the parents,
Templeman LJ emphasised that it was the duty of the court to decide
whether it was in the interests of the child that the operation take place
and he went on to say that it was not for the court to say that the life of a
mongol child ought to be extinguished. In this, he was backed by Dunn
LJ, quoting counsel: ‘The child should be put into the same position as
any other mongol child and must be given the chance to live an exis-
tence.’65 The Court of Appeal was, thus, unanimous in deprecating the
categorisation of learning disability per se as a reason for either parental or
medical abandonment and this, again, draws attention to the uneasy
relationship between the law on abortion and neonaticide which we
have already considered.
This inconsistency draws attention to the last comparative aspect of Re B
and Arthur that I would like to consider – that is, how would the cases be
categorised in the light of Hedley J’s classification described above at
p. 252 and introduced some 25 years later? Does this serve to demon-
strate a further difference between them? Judicial opinion in Re B was, as
we have seen, unanimous in describing the parental view as ‘reasonable’.
The case must, therefore, be placed squarely in the judge’s category (ii) in
which the doctors advise treatment of the child that is refused by the
parents on reasonable grounds. By contrast, I would place Dr Arthur’s
case in category (i) – the majority of the hospital staff would have ‘treated’
John Pearson as a matter of conscience had not this been refused by his
parents on unreasonable grounds. This may be the reason why Dr Arthur
was reported to the authorities and was singled out for prosecution; it may
also be the reason why Arthur remains a stand-alone case. I feel confident
that no future Dr Arthur would be as fortunate as was his or her role
model; nonetheless, the same anomaly arises – it is hard to equate this
prediction on moral grounds with society’s ready acceptance of Down’s
syndrome as a sole ground for action under the Abortion Act 1967,
section 1(1)(d).66
The Court of Appeal in Re B has subsequently been criticised, firstly,
on the minor grounds of Templeman LJ’s use of the phrase ‘condemned

64
n. 47 above, at WLR 1424. 65 ibid., at WLR 1425.
66
It is parenthetically interesting to note that nowhere was there a mention of the possibility
of an action for wrongful birth. Would B’s parents have accepted their child had they
been aware that financial assistance for her upbringing might be available? One might
equally wonder if it would be morally acceptable to dangle such a carrot in front of a
couple in distress.
Management of the disabled neonate 259

to die’.67 Insofar as this can be taken as implying approval of infantile
euthanasia one must agree with this. More importantly from the juris-
prudential aspect, the opinion has been found suspect in its reliance on
the ‘awfulness’ (Templeman LJ) or ‘intolerability’ (Dunn LJ) of a con-
dition as a benchmark for its management. This has been interpreted as
conflicting with the all-important and best interests test – a somewhat
convoluted argument to which we return at p. 276 below.68 But we can
still ask69 – is the ‘best interests test’ the ‘best test’ of treatment decisions?
The assessment of the best interests of an incompetent infant will, ulti-
mately, be subject to the experience of the adjudicator – and this will
include experience of pain and discomfort. Thus, while we can apply such
a test to physical disability, we cannot do so in the case of mental disorder
as, in that case, the mentally ‘ordered’ decision maker is groping in the
dark. The alternative, to which we have already drawn attention, is the
substituted judgment test and we have also noted that, in normal circum-
stances, the effect of applying either test may well be the same. But we
have here seen, particularly in Arthur, that they may also conflict.
Stripped to its essentials, the expert evidence in that case tells us that
the child’s best interests were served by allowing it to die.70 But there is
no evidence whatsoever that that would have been John Pearson’s judg-
ment and we can look back to the Canadian case of Dawson71 – and
the importance of the patient’s own ambience – for support of this view.
The whole difficulty in the Arthur case lay in the astonishing inability
of the witnesses – and the commentators at the time – to distinguish
between physical and mental disability. The mental status of the
Down’s syndrome child may be a most appalling handicap to the
observer72 but there is nothing to suggest that it is to the patient. And
the most important achievement of the Court of Appeal in Re B is to have,
at least, drawn attention to that distinction.
Having said which, one must point to the possibly obvious – which
is that we have been, here, concerned with mental disorder as evidenced
by disorder of the mind. Mental disorder may also arise from disability of



67
n. 8 above, at BMLR 25, 34.
68
See, in particular, Re Wyatt (a child) (medical treatment: continuation of order) (2005) 86
BMLR 173, CA at [65]. As to intolerability, see also, though in an adult context: R (on the
application of Burke) v. General Medical Council (2004) 79 BMLR 126, QBD – although,
in the event, both courts appealed either to the interests or to the welfare of the particular
patient.
69
See p. 248 above.
70
The fact that very few would now agree with that assessment does not affect the argument.
71
n. 29 above. 72 E.g. Farquharson J, n. 51 above, at BMLR 4.
260 The troubled pregnancy

the brain73 such as that due to, say, hypoxic brain damage following
complications during birth. Such cases can, however, be distinguished
from those we have been discussing in that they will, very commonly,
be associated with consequent physical disability which, as we have
observed, can be assessed objectively; the ‘best interests test’ then
becomes arguably the ‘best test’ of management. The same principle
will, in general, attach to mental disorder associated with high neural
tube defect although an accurate ‘best interests’ assessment may, in many
such cases, be impossible until relatively advanced infancy. The extreme
of this last condition is to be found in the anencephalic neonate. I know of
no instance in the United Kingdom where the management of such a case
has been contested in the courts. Were one to arise, I fancy the child
would be adjudged to have ‘no interests’; the condition would, I suggest,
be regarded as analogous to the permanent vegetative state and the
reasoning used in Airedale NHS Trust v. Bland74 would be applied.75
Beyond this, one can only reiterate the words of Lord Donaldson to the
effect that Re B provides near binding authority that a balancing exercise
is to be performed in assessing the course to be adopted in the best
interests of the child in this type of case.76 We can now consider how
this dictum has operated in the years that have followed.

Development of the jurisprudence since Re B

The doctor’s conscience (1). Before proceeding to the mainstream
cases, it will be helpful to consider Hedley J’s two uncommon scenarios so
as, hopefully, to establish the limits of doctor – parent cooperation.
Category (iv), in which the parents are demanding treatment which the
doctor cannot provide with good conscience, is the more important of
these because it sets the benchmark for the whole spectrum of therapeutic
conflict. The distinction between category (iii) and category (iv) cases is
often uncertain and depends very much on the eye of the beholder.
A short diversion to explore this track is justified although it is doubtful
if it is, in fact, possible to reach a definitive solution.

73
For proposed statutory definition of mental disorder, see Mental Health Bill 2004,
c. 2(5). The new definitions are likely to survive the parliamentary mayhem that has
surrounded the introduction of the Bill.
74
[1993] 1 All ER 821, (1993) 12 BMLR 64, HL.
75
This would contrast with the historic American case of Re Baby K 832 F Supp 1022 (FD
Va., 1993), affd 16 F 3d 590 (4th Circuit, 1994) where the court ordered an anencephalic
infant to be ventilated. The decision was, however, largely based on statute law and the
‘ethical propriety’ of providing treatment was not addressed specifically.
76
Re J (a minor), n. 8 above.
Management of the disabled neonate 261

Hedley J put it this way, albeit a little tentatively:
Conscience (whether one believes it to be God-given or culturally conditioned) is
not a wholly rational sense. It is more in the nature of intuition or a hunch as to
whether something is right or wrong . . . It seems to me . . . that a case comes within
(iv) above where a clinician concludes that a requested treatment is inimical to the
best interest of the patient, and that his professional conscience, intuition or
hunch, confirms that view. In those circumstances he may refuse to act and
cannot be compelled to do so, though he should not prevent another from so
acting, should that clinician feel able to do so.77

If, then, we are to follow Mr Justice Hedley’s schema, we must, first,
distinguish between conscience and clinical judgment – and the two are
undoubtedly different. The latter is a matter of practical experience; in
the doctor’s opinion, a treatment is either correct or it is incorrect and the
evaluation is reached by way of the patient’s overall medical benefit. The
distinction is, however, comparative rather than absolute. Thus, there
may be two therapeutic possibilities and the doctor, in applying his or her
clinical judgment, can choose one as being the better – or correct – but
not necessarily reject the other in toto. In any event, the problem is a
technical matter. Conscience, by contrast, is a matter of moral judgment –
it is either right or wrong to provide a treatment. Thus, again, two
doctors may make diametrically opposed decisions but, so long as the
decision is based on conscience, both may be acceptable – for conscience
is a personal and wholly subjective matter. In short, the concern is not so
much related to the effect on the patient as on the doctor’s appreciation of
his or her own status – is he or she acting rightly or wrongly in a principled
sense?
Put that way, conscience would seem to be the ultimate expression of
autonomy. The difficulty, however, is that this can only be regarded as
inviolable in respect of the conscientious individual; his or her views
cannot be imposed on others or used to restrict the actions of others –
and this second implication is demonstrated in Hedley J’s final caveat. On
the face of things, there is no reason why, for example, a doctor’s con-
science might not view abortion as so intrinsically wrong that he or she
would not feel justified in referring a patient to another practitioner
despite that patient’s protestation of damage, say, to her mental health.
Yet one feels that, in such circumstances, the rules of negligence would
not be abrogated by an appeal to conscience. Thus, there are bound to be
times when one’s moral conscience conflicts with one’s professional
duties – and the dividing line may be less than bright and clear.

77
n. 45 above, at 87 BMLR 183 [35], [36].
262 The troubled pregnancy

With these provisos in mind, I would regard Re J (a minor) (wardship:
medical treatment)78 – hereafter Re J(2)79 – as the scene-setting case which
defines the limits to which the doctor can be driven. It is, admittedly, not a
case of congenital disease but the points it makes so clearly can be, and
have been, applied so easily to the disabled neonate that its inclusion is
well-nigh essential to the understanding of the whole picture.
In brief, J was a 16-month-old child who was severely handicapped
both mentally and physically as a result of a fall when a baby – to such an
extent that medical opinion was that it would be inappropriate, to the
extent of it being cruel, to provide ventilation and other intensive care
should he suffer a life threatening event. Nonetheless, the local authority,
who had care of the child by way of some devoted foster parents, success-
fully invoked the inherent jurisdiction of the High Court80 and obtained
an interim order that J was to be treated aggressively should doing so serve
to prolong his life. The health authority, supported by the Official
Solicitor and the local authority, which had now changed its view,
appealed against the order which, however, still represented the wishes
of the child’s mother.
A virtually unique feature of Re J(2) is that Waite J at first instance took
the unusual step of questioning Lord Donaldson’s opinion in the previous
case of Re J81 – going so far, in fact, as to describe judgments which the
Master of the Rolls regarded as expressions of the law as obiter. As a
result, the ratio of Re J(2) in the Court of Appeal was delivered in
particularly strong language which leaves no room for doubt as to the
correct position – ‘The order of Waite J was wholly inconsistent with the
law as so stated and cannot be justified upon the basis of any authority
known to me.’82 The significance of Re J(2) can be summed up in one
quotation from the Master of the Rolls:
The fundamental issue in this appeal is whether the court in the exercise of its
inherent power to protect the interests of minors should ever require a medical
practitioner or health authority acting by a medical practitioner to adopt a course
of treatment which in the bona fide clinical judgment of the practitioner con-
cerned is contraindicated as not being in the best interests of the patient. I have to
say that I cannot at present conceive of any circumstances in which this would be
other than an abuse of power as directly or indirectly requiring the practitioner to
act contrary to the fundamental duty which he owes to his patient. This . . . is to
treat the patient in accordance with his own best clinical judgment, notwith-
standing that other practitioners who are not called upon to treat the patient

78
[1993] Fam 15, (1992) 9 BMLR 10, CA.
79
To distinguish from Re J (1990), n. 8 above.
80
Under the Children Act 1989, s.100. 81 n. 8 above. We return to Re J below.
82
Per Lord Donaldson MR, n. 78 above, at Fam 28, BMLR 18.
Management of the disabled neonate 263

may have formed a quite different judgment or that the court, acting on expert
evidence, may disagree with him.83
Balcombe and Leggatt LLJ provided concurring judgments that were
equally firmly worded and dismissive of an order that ‘purported to
order a doctor to treat a patient in a particular way contrary to the doctor’s
will’84 and there is little doubt that the spirit of R J(2) underpins the law –
despite the recent emergence of some scepticism.85
The case of Re C (medical treatment),86 for example, involved another
16-month-old child, this time suffering from the genetic disease of spinal
muscular atrophy. The rather unusual circumstances of the case involved
a therapeutic test in which her ventilator support would be removed;
should she, as a result, suffer another respiratory collapse – as was
strongly anticipated – the ventilator would not be replaced and she
would be allowed to die. Her parents, who, as orthodox Jews, held
absolutist views as to the sanctity of life, were prepared to accept the
test but insisted that the ventilator be replaced if that was necessary for the
preservation of the child’s life. I must confess, also, to some doubts as to
the ethics of a test that, in effect, challenges a baby to ‘fight for its life’;
nevertheless, the President of the Family Division granted leave to the
hospital to proceed accordingly – in the child’s best interests. In so doing,
he reiterated Lord Donaldson’s dicta and summarised these:
[To follow the wishes of the parents] would be tantamount to requiring the
doctors to undertake a course of treatment which they are unwilling to do. The
court could not make an order which would require them to do so.87
And, whether or not you believe, as I do, that Re C is, by its nature, an
incremental advance on Re J(2), it served to confirm the limits of the
paediatrician’s duties – that is, at least, until almost the moment in time
when this typescript was due for submission.88
However, before leaving those cases which have, albeit somewhat
arbitrarily, been categorised as ‘conscience cases’, we should take another
minor diversion and consider Balcombe LJ’s opinion in Re J(2) which
was especially interesting in that it paid particular attention to the parallel



83
ibid., at Fam 26, BMLR 17. 84 Per Leggatt LJ, ibid., at Fam 31, BMLR 21.
85
A determined effort at first instance to undermine it – admittedly in an adult context –
was made in R (on the application of Burke) v. General Medical Council [2005] QB 424,
(2004) 79 BMLR 126 but this was peremptorily halted on appeal: (2005) 85 BMLR 1.
We cannot, however, ignore the very contemporary results in Wyatt and An NHS Trust v.
MB which are discussed in detail at pp. 275 et seq.
86
(1997) 40 BMLR 31. 87 ibid., at 37.
88
See, now, An NHS Trust v. MB, n. 176 below.
264 The troubled pregnancy

concerns as to the health authority’s duties and the problems of resource
allocation. He had this to say:
I would also stress the absolute undesirability of the court making an order which
may have the effect of compelling a doctor or a health authority to make available
scarce resources (both human and material) to a particular child, without know-
ing whether or not there are other patients to whom those resources might more
advantageously be devoted . . . The effect of the order of Waite J . . . might have
been to require the health authority to put J on a ventilator in an intensive care
unit, and thereby possibly to deny the benefit of those limited resources to a child
who was much more likely than J to benefit from them.89

Which seems the correct approach but the case was heard before the
introduction of the Human Rights Act 1998. One must now wonder if the
selectivity involved might be held to contravene Article 2 of Schedule 1 –
the right to life.90 There seems to be no reason why it should not, at least,
be challenged on an individual basis.91

The doctor’s conscience (2). It will also be convenient at this point to
look at Hedley J’s other uncommon category – that is, where the medical
opinion is so strong, that the doctor’s conscience must be stretched to the
limit in the face of parental refusal to accept the treatment offered. We
have already noted that, beyond those concerned with blood transfusion,
such cases are extremely rare.
The case of Baby C92 is atypical in that the child was 3½ years old by
the time the court became involved. However, it involved a case of biliary
atresia and, therefore, lies within the parameters of congenital disease.
The circumstances were such that it can be regarded as a paradigm
example of Lady Hale’s ‘continuing pregnancy’.93
C had already undergone surgery at the age of 3 weeks; it was
unsuccessful and medical opinion, including that sought by his mother,
was unanimous in recommending a liver transplant. C’s mother, however,


89
n. 78 above, at Fam 30, BMLR 20.
90
‘No one shall be deprived of his life intentionally’. The very different case of R (on the
application of Rogers) v. Swindon NHS Primary Care Trust [2006] EWCA Civ 392, which
involved the provision of anti-cancer drugs, suggests that rationality in allotting scarce
resources might be the basic criterion.
91
This was proposed, at least in respect of Articles 3 and 8, in R (on the application of Burke)
v. General Medical Council, n. 85 above, at [194]. However, that is of little assistance as
that case was declared to be unconcerned with resource allocation on appeal.
92
Almost perversely known as Re T (a minor) (wardship: medical treatment) [1997] 1 All ER
906, (1996) 35 BMLR 63. The case is well discussed in Marie Fox and Jean McHale, ‘In
Whose Best Interests?’ (1997) 60 Modern Law Review 700–9; see also Andrew Bainham,
‘Do Babies have Rights?’ (1997) 56 Cambridge Law Journal 48–50.
93
See n. 1 above.
Management of the disabled neonate 265

mindful of the pain he had undergone following his earlier operation, was
unwilling to repeat the experience and took him abroad when he was
placed on the urgent transplant list. The local authority where the family
normally lived then raised the matter as a special issue under the Children
Act 1989, section 100(3). Connell J concluded that the refusal of treat-
ment was not consistent with reasonable parenting and directed that the
child be returned to the United Kingdom and be presented to a hospital
to await a transplantation operation; C’s mother, supported by his father,
appealed against this direction.
The pleadings in the Court of Appeal are interesting in that counsel for
the mother accepted the line taken in the court below and based his case
on the assumption that the mother’s decision was, in fact, ‘within that
band of reasonable decisions with which the court should not interfere
and coerce the mother’. Counsel for the local authority and the guardian
ad litem maintained that the correct test was the welfare of the child and
not the reasonableness of the parents. Almost inevitably, the court agreed
with the latter view: ‘The consent or refusal of consent of the parents’,
said Butler-Sloss LJ, ‘is an important consideration to weigh in the
balancing exercise to be carried out by the judge. In that context the
extent to which the court will have regard to the view of the parents will
depend upon the court’s assessment of that view.’94
And, then, surprisingly, the Lady Justice virtually reversed the plead-
ings and concluded that it was not in C’s best interests to undergo the
transplant operation. I fancy that this was, in the main, due to her deep
conviction that:
The mother and this child are one for the purpose of this unusual case and the
decision of the court to consent to the operation jointly affects the mother and
son . . . The welfare of the child depends upon its mother.95
And, again:
[T]he prospect of forcing the devoted mother of this young baby to the conse-
quences of his major invasive surgery, leads me to the conclusion . . . that it is not
in the best interests of this child to give consent and require him to return to
England for the purpose of undergoing liver transplantation. I believe that the best
interests of this child require that his future treatment should be left in the hands
of his devoted parents96
– who, it is to be noted, were health care workers, although we are not told
in what capacity. Whether or not this was significant, it is, from no more
than a paper reading of the case, difficult to equate so much parental

94 95
n. 92 above, at All ER 913, BMLR 71. ibid., at All ER 914, BMLR 72.
96
ibid., at All ER 916, BMLR 74.
266 The troubled pregnancy

devotion with a refusal to exchange a possibly difficult, though probably
worthwhile, several years’ life for their child for a certain and relatively
rapid death. In the late 1990s, transplantation was a rapidly evolving
specialty with improvements in, say, immunosuppression being regularly
introduced; and, if we are looking at the dangers and discomforts of the
operation, we must also remember that there were probably several dozen
parents in England crying for the opportunity for their children at the
time when C’s parents were resisting it with such determination.
Re T is very unusual, if not unique, both in its origin as being very close
to a category (i) case97 and as to its disposal contrary to medical opinion.
As a result, I feel we should not overestimate its significance. Against my
obvious doubts as to the rightness of the outcome, it has to be noted that
the decision was unanimous; the impression, thus, remains that there
was, perhaps, far more in the case than appears in the written word.
Possibly the main lesson to be learned from the case is that, no matter
how determinedly the courts will take measures to avoid the impression,
‘best interests’ is, at heart, a subjective test – subject, that is, to the
inevitable variations in individual human natures. We can leave it with
the words of Professors Kennedy and Grubb: ‘Re T is a most unusual case
indeed.’98

The mainstream cases. Having set the scene in 1981 and disposed
of those cases which are mainly of interest in demonstrating the extremes,
we can now concentrate on our search for any legal pattern directed to the
management of the disabled neonate that may have evolved over the last
quarter of a century.
The first apposite post-Arthur example is Re C,99 a case which takes on
an added significance in being the first of the series of relevant cases
decided by Lord Donaldson MR whose influence in this field has been
so profound.100 Re C concerned a moribund infant with severe brain
damage due to congenital hydrocephalus. She was, in fact, already a
ward of court when a dispute arose based on the question: should she


97
It certainly was not a ‘pure’ category (i) case as one surgeon, on whom the Court
depended heavily, was not prepared to operate with the parents still objecting. This
does not seem to be a throw-back to Re B in 1981 – where there was a misunderstanding
of the relative roles of the parents and the Court – but was, rather, due to a fear that the
operation would not succeed without adequate long-term post-operative care.
98
Medical Law (London: Butterworths, 3rd edn 2000) at 802.
99
Re C (a minor) (wardship: medical treatment) [1990] Fam 26, [1989] 2 All ER 782.
100
I have reviewed the early cases elsewhere in J. K. Mason, ‘Master of the Balancers: Non-
Voluntary Therapy under the Mantle of Lord Donaldson’ [1993] Juridical Review
115–32.
Management of the disabled neonate 267

be treated as a non-handicapped child or should she receive ‘such treat-
ment as is appropriate to her condition’?
In deciding for the latter option, Ward J at first instance inadvertently
made medico-legal history when he directed that leave be given to the
hospital authorities ‘to treat the ward to die with the greatest dignity and
the least of pain, suffering and distress’. The concept of being ‘treated to
die’ clearly opened the way to suggestions that C was being treated in a
way designed to bring about her death and the judge was quick to amend
his direction to read:
I direct that leave be given to the hospital authorities to treat the ward in such a
way that she may end her life and die peacefully with the greatest dignity and with
the least of pain, suffering and distress.101

None of the principals in the case objected to this but, nevertheless, the
Official Solicitor, acting as guardian to C, appealed on the grounds,
firstly, of the phrasing of the original direction and of the anxiety as to
motive that this involved, and, secondly, as a way of questioning parts of
the order that appeared to provide that in no circumstances should
certain treatment be undertaken. In the end, the Court of Appeal unan-
imously allowed the appeal to the very narrow extent of deleting such of
the judge’s direction which might be misinterpreted as conflicting with
the expert medical advice.102 The general direction that the goal should

<<

ńňđ. 10
(âńĺăî 12)

ŃÎÄĹĐĆŔÍČĹ

>>