<<

ńňđ. 11
(âńĺăî 12)

ŃÎÄĹĐĆŔÍČĹ

>>

be to ease C’s suffering rather than to achieve a short prolongation of her
life was, however, approved.
Insofar as no medical or surgical procedure could alter the fact that C
was dying, it was a relatively easy case to decide. But it is to be noted that
the only United Kingdom case available as a precedent was Re B in 1981
which, although being of very different type, was, nevertheless, dealt with
on an opposing line. It can possibly be said that the decision in Re C
contained nothing new; nonetheless, it laid down at least one parameter
for the emerging jurisprudence to use as a sheet anchor – that a dying
child can be allowed to die in peace.
The next case, Re J,103 however, dealt with a child who was not dying.
The problem was that of the management of J in the event that his
condition deteriorated to the extent that, while he could be treated and,
perhaps, resuscitated, he would die in the absence of such treatment. This
was a novel situation for the courts at the time; it has, however, now


101
n. 99 above, at Fam 35, All ER 787.
102
Indeed, the underlying current of Re C is clearly devoted to nullifying what seems to have
been a whispering campaign against the hospital.
103
Re J, n. 8 above.
268 The troubled pregnancy

become what is virtually the standard scenario in disputed cases of neo-
natal medicine. Re J can, therefore, be looked on as the foundation case
which laid down the template for judicial decision-making and it has
already been referred to on several occasions in this chapter. It is, however,
such a milestone case that it is essential that its message is consolidated.
J was a 5-month-old ward of court104 who had been severely brain
damaged during birth following a 27-week gestation period. He was ven-
tilated for a month but was then weaned off the ventilator. Subsequently,
he suffered from multiple cardio-respiratory failures and was, at one time,
returned to full ventilation; at the time of the trial, however, he was breath-
ing independently. He was likely to be quadriplegic, blind and deaf but, at
the same time would probably be able to feel pain to the same extent as a
normal child. The problem was what to do in the event that J had another
attack requiring ventilatory treatment and, in the event, Scott Baker J
made an order indicating that it would not be in J’s best interests to
reventilate him in the event of his stopping breathing unless to do so
seemed appropriate to the doctors caring for him at the time.
The precedental importance of Re J is emphasised by the fact that the
Official Solicitor appealed the order – and he or she has never since done
so in similar circumstances. In essence, the Official Solicitor based his
appeal on two grounds. First he held that, lying between the extremes of
Re C105 and Re B,106 J’s case broke new jurisprudential ground and,
second, he maintained that, while Scott Baker J was correct in acting in
what he thought were the best interests of the child, he erred ‘in that a
court is never justified in withholding consent to treatment which could
enable a child to survive a life-threatening condition, whatever the quality
of the life which it would experience thereafter’.107 Left like that, the case
would have been a straightforward assessment of the vitalist or absolutist
approach which we have discussed above at p. 243.108 However, in the
alternative, the Official Solicitor submitted that withholding treatment
was only justified if the court was certain that life would be ‘intolerable’ or

104
The wardship was for extraneous reasons. Thus, although there was no conflict between
the doctors and the parents, the rights and duties as to treatment were vested in the
court. The parents were not formally associated with the appeal but had, by that time,
begun to doubt their decision to accept the order given at first instance. It is to be noted
that, for present purposes, Re J is an exceptional case that is being used to demonstrate
the general rule.
105
See p. 266 above. 106 See p. 252 above.
107
At [1990] 3 All ER 930, 934, 6 BMLR 25, 29.
108
The Solicitor depended to a large extent on the opinions given in McKay v. Essex Area
Health Authority [1982] QB 1166 (for which, see p. 205 above) but Lord Donaldson,
supported by the other members of the court, felt that the case provided neither
guidance nor assistance – and I fancy that most people would agree that this was so.
Management of the disabled neonate 269

so awful that, ‘in effect, the child must be condemned to die’;109 this, he
argued, had not been demonstrated in J’s case.
Lord Donaldson, as we have already seen, was quick to reject the
absolutist approach – ‘In real life there are presumptions, strong pre-
sumptions and almost overwhelming presumptions, but there are few, if
any, absolutes’110 – and turned to the alternative submission. Here,
having analysed the speeches in Re B in depth, he expressed the funda-
mental purpose of the hearing in J’s and similar cases in two sentences:
What doctors and the court have to decide is whether, in the best interests of the
child patient, a particular decision as to medical treatment should be taken which
as a side effect will render death more or less likely . . . What can never be justified is
the use of drugs or surgical procedures with the primary purpose of [hastening the
moment of death].111
He then explained how this was to be done:
[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.112
And, significantly for the future:
I do not think that we are bound to, or should, treat Templeman LJ’s use of the
words ‘demonstrably so awful’ or Dunn LJ’s use of the word ‘intolerable’ as
providing a quasi-statutory yardstick.

And, in applying these generalisations to J’s case, the court unanimously
accepted medical advice as to the discomforts and dangers involved in
further invasive treatment and affirmed the judge’s decision, subject to
some minor variations which need not concern us here.
Thus, Re J makes the position clear and, at the same time, provides a
template for the future. The foregoing summary may not, however,
emphasise the extreme caution with which the decision was reached.
Two concluding quotations will, I think, suffice. We have already noted
Taylor LJ on the presumption in favour of taking all reasonable steps to
preserve human life save in exceptional circumstances.113 And, finally,
we have Balcombe LJ:
There is only one test: that is the interests of the ward are paramount. Of course
the court will approach those interests with a strong predilection in favour of

109
As per Templeman and Dunn LLJ in Re B, p. 259 above.
110
n. 103 above at All ER 937, BMLR 32–33.
111
ibid., at All ER 938, BMLR 34 (emphasis in the original). Lord Balcombe also noted
that in none of the wardship cases had there been a proposal that a positive step should
be taken to terminate life.
112
Ibid. 113 n. 8 above.
270 The troubled pregnancy

the preservation of life because of the sanctity of human life . . . [But] to preserve
life at all costs, whatever the quality of life to be preserved, and however distress-
ing to the ward may be the nature of the treatment necessary to preserve life, may
not be in the interests of the ward.114
Re J is slightly complicated by Taylor LJ’s unconventional views as to
substituted judgment when he said:
I consider that the correct approach is for the court to judge the quality of life the
child would have to endure if given the treatment and decide whether in all the
circumstances such a life would be so afflicted as to be intolerable to that child.
I say ‘to that child’ because the test should not be whether the life would be
tolerable to the decider. The test must be whether the child in question, if capable
of exercising sound judgment, would consider the life tolerable.115
That divergence from mainstream jurisprudence lies, however, at the the-
oretical level. In practice, Re J is as good a piece of pragmatic reasoning as
is likely to be found; it fully deserves its historic position and it still remains
the authority in the field that is most consistently quoted with approval.

Later cases of particular interest. The courts’ interest in the con-
genitally disabled baby seems, then, to have waned for some 15 years
before there was a sudden burst of reactivity which is detailed later in the
chapter. Meantime, I would like to look, briefly, at two somewhat isola-
ted cases which provide links in the continuing development of the
jurisprudence.
The first of these is Re C (a baby).116 C was a premature baby who
developed meningitis and, as a consequence, was so disabled that Sir
Stephen Brown P summed up her condition as being ‘almost a living
death’. She was wholly dependent on artificial ventilation and it was
anticipated that she would suffer from increasing pain and distress if the
circumstances remained as they were. There was no conflict, both the
parents and the doctors agreeing that artificial ventilation should be with-
drawn – in which case she would die almost immediately; C was, accord-
ingly made a ward of court. Sir Stephen Brown P concluded that she did
not have ‘what can be described as an independent existence’ and unhesi-
tatingly granted leave that artificial ventilation should be discontinued.
Reading the bare bones of the very short report, it is, in fact, difficult to
see why C’s case could not have been dealt with as a simple matter of agreed
medical futility and, therein, lies the interest of the case. Probably as a direct
consequence, the President was asked to comment on when such cases
should be brought to court for adjudication. He declined to do this, holding

114 115
n. 103 above, at All ER 942, BMLR 39. ibid., at All ER 945, BMLR 42.
116
[1996] 2 FLR 43, (1996) 32 BMLR 44.
Management of the disabled neonate 271

that each case must be considered on its merits and, thereby, setting the
pattern for future decision-making. Even so, it might have been useful had
he explained why C was made a ward of court in the uncontroversial
circumstances of her death; it was said to be appropriate that the parents
should be relieved in some measure of their grave responsibility but many
others must have shouldered similar responsibility with no such assistance.
The case remains something of a medico-legal conundrum.
The second case I have singled out is that of A National Health Service
Trust v. D.117 ID was also born prematurely and suffered from multi-
organ dysfunction.118 At the age of 19 months, the Trust, supported by
the Official Solicitor, applied for authority not to resuscitate him by
artificial ventilation in the event of a future cardiac or respiratory collapse
but to allow him to die with suitable palliative care. The application was
strongly opposed by his parents who were, at the time, caring for him at
home and who considered that there was improvement in his condition –
including some response to his environment.119 Thus far, then, ID’s case
was very similar to those that have gone before; the new twist was that the
order was the first to consider the problems raised by the European
Convention on Human Rights, now incorporated in the Human Rights
Act 1998 – albeit that the Act was not yet in force at the time.
In giving his judgment, Cazalet J helpfully summarised the four prin-
ciples that were now established as governing the law in this area. These
were:
* The paramount consideration must be the best interests of the child;

* The court’s respect for the sanctity of human life must impose a strong

obligation in favour of taking steps capable of preserving life, save in
exceptional circumstances;
* The court is concerned only with the circumstances in which steps

should not be taken to prolong life; and
* The court cannot direct a doctor to provide treatment when to do so is

contrary to his or her clinical judgment120

117
[2000] 2 FLR 677, (2000) 55 BMLR 19.
118
Estimates of the occurrence of disability in infants born between 23 and 28 weeks’
gestation vary considerably but severe disability is most likely to be in the region of 20 per
cent: C. de Garis, H. Kuhse, P. Singer and V. Y. Yu, ‘Attitudes of Australian Neonatal
Paediatricians to the Treatment of Extremely Preterm Infants’ (1987) 23 Australian
Paediatric Journal 223–6. The reference is old but is interesting because of its authorship;
the actual figure is unlikely to be very different today.
119
The situation was complicated in that, in addition to the universal medical opinion being
that intensive care was inappropriate, there were no beds available in the hospitals with
suitable units.
120
n. 117 above, at FLR 685–6 BMLR 28. In addition, Cazalet J referred to the Court of
Appeal’s recommendation in R v. Portsmouth Hospitals NHS Trust, ex p Glass [1999] 2
272 The troubled pregnancy

and, having considered all these in the course of a detailed consideration
of the evidence, he granted the declaration, subject to the clinical opinion
of the paediatrician in charge should ID be readmitted to hospital.
Cazalet J relied heavily on Re J. However, as already mentioned, the
novel aspect of the judgment related to the impact, if any, of the
Convention rights on the legal position in the United Kingdom as it is
defined by that case. Clearly, the most relevant item was Article 2,121
which states:
Everyone’s right to life shall be protected by law. No one shall be deprived of his
life intentionally save in the execution of a sentence of a court . . .

In the absence of any apposite ruling by the European Court of Human
Rights, Cazalet J was forced to extemporise. First, he ruled that there
could be no infringement of Article 2 given that the order was issued in
the best interests of ID.122 Second, he noted that Article 3, which requires
that a person is not subjected to inhuman or degrading treatment,
includes the right to die with dignity123 – and a major purpose of the
declaration made was to protect that right. He concluded that no breach
of any Convention Article was shown in his ruling. This opinion has not
been challenged; nevertheless it remains only an opinion. One feels that it
is likely to be followed; it could be, however, that the increase in ‘rights-
based litigation’ will dictate ever-increasingly meticulous examination of
the facts in future cases that are conducted under the umbrella of the
1998 Act.
This detailed consideration of the past cases might suggest that a
recognisable pattern of judicial action has been established. It could be
supposed that the legal and ethical minefield of neonatal disability had
been successfully cleared and that further litigation was both unnecessary
and unlikely – each case was to be decided on its merits and the founda-
tion ‘merits’ had been clarified. Yet the early 2000s produced a flurry
of new, and hotly contested, cases that attracted considerable media

FLR 905, (1999) 50 BMLR 269 to the effect that it would be inappropriate for the court
to grant a declaration in anticipation of circumstances that had not yet arisen. His
Honour considered, however, that the two cases were distinct – an opinion with which
most would agree. In passing, I should explain that Glass concerned a 12-year-old boy
and that, accordingly the case lies outside the remit of this chapter.
121
See, now Human Rights Act 1998, Schedule 1, part I.
122
A similar ruling, also involving Article 8 (the right to respect for a person’s private life)
has been made in the adult context although the reasoning was rather different and is
scarcely applicable to children: NHS Trust A v. Mrs M, NHS Trust B v. Mrs H [2001] 2
WLR 942, (2001) 58 BMLR 87.
123
Relying on D v. UK (1997) 24 EHRR 423 although this case depended on positive action
which caused suffering. A right to ‘die with dignity’ does not include right to have one’s
life terminated: Pretty v. United Kingdom [2002] 2 FLR 45, (2002) 66 BMLR 147.
Management of the disabled neonate 273

attention. Quite why this should have happened is tantalisingly uncertain.
Nevertheless, the cases form an interlocking group that is also defined by
the unusual intensity of the emotions provoked. Insofar as they suggest at
least an incremental change in judicial attitudes, they can usefully be
discussed as a distinct group that provides its own lessons.

The recent cases

The case of Charlotte Wyatt. The saga of Baby Wyatt began in 2004
and is still ongoing as this typescript goes to press. Charlotte Wyatt
weighed 1 lb when she was born after 26 weeks’ gestation – which is very
close to the limit of physiologically possible independent life. She had
minimal lung function requiring 40–50 per cent oxygen delivered by way
of a head box and her brain was very severely underdeveloped; even so, she
could experience pain and distress. Her condition deteriorated following
an infection at the age of 9 months and, at the age of one year, the NHS
Trust, supported by a unanimous medical opinion, and that of the guar-
dian appointed to supervise her interests, sought a declaration that the
provision of artificial ventilation, if required, would be against her best
interests; the Trust also requested relief to permit the doctors not to send
her for artificial ventilation or similar aggressive treatment even though she
124
might die sooner than she would if it were provided. This was strongly
opposed by the parents whose maximum concession to an otherwise
‘life at all costs’ stance was that they would contemplate withdrawal of
ventilation after a few days’ trial had shown it to be of no value to the child.
Hedley J’s assessment was singularly sensitive and far-ranging. His
introduction is a salutary reminder of the difficulties the courts accept
when providing solutions to medical dilemmas:
This kind of dispute is to be resolved by a Judge of the Family Division and, whilst
the judge will be more aware than anyone of his own limitations in deciding as
profound an issue as this, decision there simply has to be. It may well be that an
external decision in the end is a better solution than the stark alternatives of
medical or parental veto.125
Even so, the decision in Charlotte Wyatt’s case was, in this writer’s
opinion, virtually dictated by precedent. The judge quoted Hoffmann


124
Re Wyatt (a child) (medical treatment: parents’ consent) [2005] 1 FLR 21, (2004) 84
BMLR 206. This stage of the case has been reviewed by David W. Meyers, ‘Wyatt and
Winston-Jones: Who Decides to Treat or Let Die Seriously Ill Babies?’ (2005) 9
Edinburgh Law Review 307–16.
125
Re Wyatt, n. 124 above, at [4].
274 The troubled pregnancy

LJ’s firm opinion as to the current attitudes to the sanctity of life doctrine
and how, in particular, it can be modified by respect for the dignity of the
individual human being.126 He reviewed the best interests test along the
lines we have done in this chapter and, of course, relied heavily on Lord
Donaldson and Taylor LJ in Re J.127 Faced with the anxiety for a ‘good’,
inevitable death for Charlotte and a uniformly adverse prognosis as to her
quality of life, if any,128 it is difficult to see that he had any real alternative
to granting the relief requested – despite the fact that The Times asserted
that the judge’s ‘decision was wrong’.129 It is, however, to be noted that
the relief given was, perforce, only permissive130 and that is where the
complexity of the case appears to lie. The declaration ran:
In the event that the responsible paediatric medical consultants reach a decision
that Charlotte’s medical condition shall have deteriorated to such an extent that
she is unable to maintain oxygen and carbon dioxide exchange, it shall be lawful
for responsible paediatric medical consultants to reach a decision that she should
not be intubated and/or ventilated.
A similar declaration was made as to the provision of continuous positive
airways pressure. Thus, there was nothing final about the orders which
merely stated that the doctors were acting lawfully should they take a
given action in what their clinical acumen indicated to be the best inter-
ests of the patient.
To the surprise of almost everyone concerned, Charlotte’s condition
also appeared to be fluid rather than static – at least in respect of visible
signs. Accordingly an application was made to stay the orders pending
further investigations into her condition.131 Hedley J refused this on
several grounds, the most significant of which were, first, that the order
did not derogate from the duty of the doctors to treat the child in what
they saw as its best medical interests and, second, because there was no

126
In Airedale NHS Trust v. Bland [1993] AC 789 at 826. This, as is well known, was the
primary case on the management of the permanent vegetative state. Although it went to
the House of Lords, Hoffman LJ’s speech in the Court of Appeal is probably the most
illuminating of the many opinions recorded in that case as to its moral dimensions.
127
n. 8 above.
128
Prophetically, Hedley J did say:’ Yet no-one can say for absolute certain that she will not
survive for another year however much the probabilities are against it’ (Re Wyatt, n. 124
above, at [29]). Charlotte is, in fact, still alive – and adopted – in 2007.
129
Leading Article ‘Life and Law’ (2004) 8 October, p. 15. Margot Brazier, ‘Times of
Change?’ (2005) 13 Medical Law Review 1–16 points out that such disputes are not
novel; the difference between 1993 and 2005 is that they are now conducted in a glare of
publicity.
130
Injunctive relief was precluded by the decision in the Court of Appeal in Re J(2), n. 78
above, while the difficulties involved in granting positive declaratory relief become
apparent in the later hearings.
131
Portsmouth Hospitals NHS Trust v. Wyatt and ors [2005] EWHC 117.
Management of the disabled neonate 275

evidence of any significant change in Charlotte’s underlying condition and
her ability to withstand aggressive or invasive treatment. This judgment
was appealed but, before that came to court, a third High Court hearing
was undertaken three months later.132
Here, the goal-posts were again shifted and the obligation to show
that the declarations should continue passed to the NHS Trust.
Certainly there was a change in Charlotte’s condition since the orders
were made; it could no longer be described as being intolerable. She
still, however, suffered from a chronic respiratory disease that was
expected to be fatal and, in essence, the matter was one of quite narrow
disagreement between the Trust and the parents. The former was
prepared to give treatment up to but not including invasive intensive
care which was likely, should she survive, to cause deterioration in her
condition and would certainly imperil a peaceful death; at least two
specialists inferred that aggressive treatment would be contrary to
their professional conscience. The latter maintained that all available
treatment should be given. In favouring the majority medical opinion,
Hedley J went, perhaps, one stage further and, rather than wait until a
crisis occurred, made an immediate order to continue his declara-
tions.133 In doing so, he stressed again that the order was permissive
only – the Trust was under no obligation to follow it should the circum-
stances indicate that aggressive treatment was, in fact, appropriate; he
also mandated that the order was not open-ended but was subject to
compulsory review.
The matter then went to the Court of Appeal,134 the application
being, in fact, one seeking permission to appeal to that court. The
issue lay not so much in the substance of the declarations as in the
propriety of continuing them in the absence of an immediate need for
their application – basically, ‘if declarations are capable of becoming
unlawful due to changes of circumstances, was it appropriate to make
them in the first place?’135 The main finding of the Court – that the
judge was entitled to continue the declarations and right to order a
review – are, therefore, of comparatively little interest in the medico-
ethical context which provides the substance of this book. Nonetheless,

132
Wyatt v. Portsmouth Hospitals NHS Trust and Wyatt (by her guardian) (No. 3) [2005]
EWHC 693, [2005] 2 FLR 480.
133
Relying on the exceptional circumstances of the case and on the advice of Lord Woolf
MR in R v. Portsmouth Hospitals NHS Trust, ex p Glass [1999] 2 FLR 905 – the general
rule is that declarations should be sought and considered in the light of circumstances as
they are and not as they may be.
134
Re Wyatt (a child) (medical treatment: continuation of order) (2005) 86 BMLR 173.
135
ibid., at [113].
276 The troubled pregnancy

the Court of Appeal decision in Wyatt is, in the writer’s opinion, of
major medico-legal significance on two main counts. First, it and later
companion cases136 stress the case specificity of decisions such as these;
I have always emphasised what I see as the impossibility of laying down
either a legal policy or a single ethical imperative by which to dictate
‘good medical practice’137 – and this is particularly so in the case of life
or death decision-making.138 Secondly, the Court took the opportunity
to examine and define the ‘best interests’ test in depth with the clear
intention that the judgment would define the law at least for some time
to come.139 Despite the fact that we have already looked at ‘best inter-
ests’ in general, it will not be inappropriate to take time-out in which to
examine what was said in particular.
Cut down to the bare bones, the argument as to the test to be applied in
deciding non-treatment cases lies between, on the one hand, a conclusion
as to the ‘intolerability’ of continued life and, on the other, an assessment
of whether the patient’s ‘interests’ – as widely defined – are ‘best served’
by continued or discontinued treatment, which, in the great majority of
cases, means, perforce, life or death.
The former ‘test’ owes its origin to Templeman LJ’s allusion to it in Re B
which we have already discussed.140 The Court of Appeal in Wyatt took the
view that Lord Templeman’s opinion, which was backed by Dunn LJ141
but which was, of necessity, given very hurriedly, had been disapproved by
the majority in the undoubtedly seminal case of Re J.142 I, personally, feel
that is overstating the case to an extent – such criticism as there was
was directed mainly to the somewhat emotive language involved.
Certainly, Taylor LJ in his concurring speech, was prepared to accept that
the ‘correct approach’ to this type of decision-making was to ask and


136
See, for example, An NHS Trust v. MB (a child represented by CAFCASS as guardian ad
litem) [2006] 2 FLR 319 per Holman J at [106], [107].
137
Most recently in J. K. Mason, ‘Ethical Principles and Ethical Practice’ (2006) 1 Clinical
Ethics 3–6.
138
Although they are dealing with adult situations it is interesting and instructive to
compare W Healthcare NHS Trust v. H and another [2005] 1 WLR 834 (treatment
authorised against wishes of the family) with An NHS Trust v. D (2006) 87 BMLR
119 (non-treatment authorised against the wishes of the family). The courts seem to be
moving gradually to the recognition of ‘a PVS state’ as the benchmark of futility in
treatment.
139
‘[I]n cases of this sensitivity and difficulty, the guidelines which the experienced judges
of the Family Division have to follow should be both as clear and as simple as is
consistent with the serious issues which they engage’ (n. 134 above, at [85]).
140
At p. 257 above.
141
‘There is no evidence that this child’s short life is likely to be an intolerable one’ (n. 47
above at WLR 1424).
142
The relevant passages are quoted in Re Wyatt, n. 134 above at [68]–[74].
Management of the disabled neonate 277

answer the question ‘whether in all the circumstances such a life would be
so afflicted as to be intolerable to the child’.143 More recently, Brooke LJ
has said:

Normally the approach that the law should adopt is whether, in the judgment of
the court, the continuation of life would be intolerable,144

a statement that the Court of Appeal in Wyatt was quick to interpret as
being, at best, obiter.
It is, in fact, not entirely clear why the concept of an intolerable life
has become so unpopular in the eyes of the law. Many would say that
intolerability is a term that is easily understood and, therefore, descrip-
tively useful.145 On the other hand, it has shades of meaning that vary
from one observer to another146 and, more importantly, its assessment
carries overtones of a substituted judgment which the courts, as we have
seen, are anxious to avoid. The particular impetus to its rejection as
a test, however, probably stems not from a generality but from the
nature of the pleadings in Wyatt itself. Intolerability is an absolute;147
anything short of it must be tolerable to a degree. Counsel for
Charlotte’s parents argued that, since there had been some objective
improvement in her condition between the first and second hearings,
her life could no longer be said to be intolerable and, therefore, the
judge had been wrong to continue the declarations.148 The use of the
word ‘intolerable’ was, thus, transformed from being a subject for quiet
academic analysis to one of immediate practical importance on which
the whole case hinged.


143
Re J, n. 8 above, at 42. Also adopted by Sir Stephen Brown P in Re R (adult: medical
treatment) (1996) 31 BMLR 127 at 136.
144
In W Healthcare Trust, n. 138 above, at [26]. This may have been prompted by the
statement of Munby J ‘The touchstone of best interests in this context is intolerability’ in
R (on the application of Burke) v. General Medical Council (2004) 79 BMLR 126 at [113].
Munby J’s decision was, however, somewhat tersely disapproved in the Court of Appeal:
R (on the application of Burke) v. General Medical Council (2005) 85 BMLR 1 and is, as a
result, a doubtful authority.
145
Professor Margaret Brazier has said: ‘With respect to Mr Justice Hedley the prevailing
factor knitting together most of the diverse judicial reasoning in these tragic cases is
intolerability: is the treatment proposed likely to render the continued life of the child
demonstrably awful?’ – M. Brazier, ‘Letting Charlotte Die’ (2004) 30 Journal of Medical
Ethics 519–20.
146
One is reminded of Lord Donaldson MR: ‘Even very severely handicapped people find a
quality of life rewarding which to the unhandicapped may seem manifestly intolerable’
in Re J (n. 8 above, at Fam 46 All ER 938).
147
Indeed, it is arguable that ‘an intolerable life’ is a contradiction in terms. Much the same
view is put by Holman J in An NHS Trust v. MB, n. 136 above, at [17].
148
n. 134 above, at [60].
278 The troubled pregnancy

Hedley J, in his original judgment,149 reviewed the case law described
in the earlier part of this chapter and, particularly, those cases which
raised the criterion of an intolerable life. He concluded:

Helpful though these passages are, it is in my view essential that the concept of
‘intolerable to that child’ should not be seen as a gloss on, much less a supple-
mentary test to, best interests. It is a valuable guide in the search for best interests
in this kind of case.150

He was, later, supported in this by Butler-Sloss P who said, in a parallel case:
[T]he court should be focusing on best interests rather than on the concept of
intolerability, although the latter may be encompassed within the former.151

He was also fully supported by the Court of Appeal who had this to say:
[T]he forensic debate should, in our judgment, be unfettered by any contentious
glosses on the best interests test which are likely either inappropriately to shift the
focus of the debate, or to restrict the broad exercise of the judicial discretion
involved in balancing the multifarious factors in the case.152
We do not, however, dismiss ‘intolerability’ as a factor altogether. As we have
already stated, we agree with Hedley J that whilst ‘intolerable to the child’ should
not be seen either as a gloss on or a supplementary guide to best interests, it is, as
he said, a valuable guide in the search for best interests in this kind of case.153

And, at this point, we might pause and wonder just what do these
passages mean? I must express my sympathy with Holman J who, in a
later case, ruminated:

I avoid reference to the concept of ‘intolerability’. . . In any event, the most recent
word from the Court of Appeal on the concept of ‘intolerability’ . . . [says] that the
concept of ‘intolerable to the child’ should not be seen as a gloss on, much less a
supplementary test to, best interests. Although they continue by saying the con-
cept is ‘a valuable guide in the search for best interests in this kind of case’, I doubt
my own intellectual capacity on the one hand to exclude it even as a ‘gloss on’,
much less supplementary test to, best interests; and yet on the other hand treat it
as a ‘valuable guide’.154

It is very difficult to disagree with these sentiments which drive one to ask
whether we are not, again, becoming involved in a non-existent argu-
ment. All those who have been quoted as advocating ‘intolerability’ as a
test for discontinuing treatment have seen the degree of the tolerability of

149
n. 124 above. 150 ibid., at [24].
151
In Re L (medical treatment: benefit) [2005] 1 FLR 491 at [12].
152
n. 134 above, at [86]. 153 ibid., at [91].
154
In An NHS Trust v. MB, n. 136 above, at [17].
Management of the disabled neonate 279

pain and suffering as no more than a feature of the child’s overall inter-
ests. We have, for example, noted Butler-Sloss P’s simple relegation of
‘intolerability’ to no more than an aspect of ‘best interests’, and we have
Brooke LJ taking a very similar line – if only by implication.155
And this, surely, is the correct approach. The long discussion of the
phrase and the ambiguous conclusion of the Court of Appeal in Wyatt
serve only to muddy the waters. It may have been necessary for the
solution of that particular case but, as to generality, one must agree
with Holman J that, effectively, the passage adds nothing to the existing
law.156 As an analysis, it fails in its object of providing guidelines of clarity
and simplicity.
The same cannot be said of the second consideration – that is, as to the
determination of the disabled infant’s interests as a whole. Here, the
guidelines, based on a number of so-called intellectual milestones, pro-
vide an extended and particularised framework of the existing jurispru-
dence which has been followed with approval in later cases.157 It will be
convenient to tabulate these:158
* The welfare of the child is paramount and the judge must look at the

question from the assumed point of view of the patient;159
* There is a strong presumption in favour of a course of action which will

prolong life, but that presumption is not irrebuttable;
* The term ‘best interests’ encompasses medical, emotional, and all

other welfare issues;160
* The court must conduct a balancing exercise in which all the relevant

factors are weighed;
* A helpful way of undertaking this exercise is to draw up a balance

sheet.161
And quite clearly, the degree of suffering involved, not only in the dis-
ability itself, but also that associated with the treatment of the disability –
e.g. mechanical ventilation, intubation and the like – can, and will, be
subsumed within these parameters.


155
n. 144 above.
156
In An NHS Trust v. MB, n. 136 above, discussed in detail at p. 284.
157
ibid. While this list is very helpful, it is, in effect, little more than an amplification of the
principles set out by Cazalet J in A National Health Service Trust v. D, n. 117 above.
158
n. 134 above, at [87].
159
As has already been discussed, it is difficult not to read an element of substituted
judgment into this guideline. It is, however, very pertinent to the neonatal condition
as the neonate will have known no other condition. See McKenzie J in Dawson, n. 29 above.
160
And, surely, it is easy, perhaps obligatory, to include ‘tolerability’ under this head.
161
Following Thorpe LJ’s detailed advice in Re A (medical treatment: male sterilisation)
[2000] 1 FLR 549 at 555.
280 The troubled pregnancy

It remains only, to consider the final phases of the saga of Charlotte
Wyatt as at the time of writing – and, here, the procedural issues do
assume a medico-ethical significance in that the policy behind the grant-
ing of declarations in this type of case was fully explored. The Court of
Appeal had mandated a further hearing should her circumstances change
and, by the time Hedley J was impelled to give his fourth judgment,
Charlotte’s consultant paediatrician had, in his own words, ‘crossed an
invisible line whereby I can say to the court that there are now circum-
stances where . . . it would be justifiable for Charlotte to be ventilated’.
Having said which, he went on to make it ‘crystal clear that it was quite
impossible to define in advance what these circumstances might be’.162
What had become equally plain was that the attitudes of the parents to the
Trust had become so polarised that the staff were fearful of the outcome
should they be required to take a non-treatment decision – so much so
that, in the words of Hedley J, they were asking to be granted the last word
in the event of an irreconcilable disagreement.163 Declarations are, how-
ever, normally granted on an all or nothing basis in order to deal with a
particular situation. It is possible to make such declarations on the basis of
clearly anticipated facts, as had been done in Charlotte’s case, but the
facts on which the declaration depended were now no longer sustainable.
In essence, the case could be seen as veering from Hedley J’s category (iv) –
a matter of conscience – to that of category (iii), depending on clinical
judgment; the boundary was, however, indefinite with much depending
on Charlotte’s uncertain clinical progress.
It is clear from the report that the case had now become so sensitive that
Hedley J was obliged to pick his words with particular care; while this was
entirely praiseworthy, it has to be said that it led to some loss of clarity.
I have, therefore, done my best to extract from his latest judgment164
what I see as the main pointers as to the law as it stands in the absence of
any declaration:
* The proposition that the doctors would have to follow the instructions

of the parents against their own judgment of the patient’s best interests
does not represent the law (at [28]);
* The duty of the clinician is to act in the patient’s best interests albeit

while working in partnership with a child’s parents whenever that is
possible (at [29]);
* A doctor cannot be required to act contrary to his or her conscience

though he should take a second opinion and not prevent another from
so acting should that clinician feel able to do so (at [32] and [36));

162
Re Wyatt (2005) 87 BMLR 183 at [8] and [10].
163
n. 162 above, at [14]. 164 n. 162 above.
Management of the disabled neonate 281

Somewhat tentatively, Hedley J suggests that a doctor would be being
*

required to act contrary to his or her conscience if he or she concluded
that the requested treatment was inimical to the patient’s best interests
and that his or her professional ‘conscience, intuition or hunch con-
firms that view’ (at [36]).165
So much for the generality. Returning, however, to the particularity of
Wyatt, Hedley J concluded that, while it was possible to use a declaration
to resolve a future dispute, the court should be careful in doing so when
the medical opinion was unanimous – to do so would, in effect, be
providing the treating clinician with a therapeutic veto. It was, he
thought, impossible to frame a conventional declaration. His judgment
had set out the law in the given circumstances in a way ‘comprehensible to
all’ and, as a consequence, no further declaratory relief was required.166
One can sympathise with the judge when he pointed out, with regret, that
there was really no way in which he could preclude future litigation.167
The sheer volume of litigation provoked by the case of Charlotte Wyatt
dictated that many of the issues involved, and generally accepted as being
finalised, were rehearsed in depth; the case took on its own measure of
importance and, to an extent, introduced an element of confusion.
However, a further case was being heard at much the same time which,
I believe, demonstrates more typically the flavour of the jurisprudence
relating to the management of severe congenital disease in the early
twenty-first century.

Re L – the case of Baby Winston-Jones. Re L168 concerned a child
born 9 months previously with trisomy 18 (Edwards’ syndrome). He had
multiple heart defects, suffered from epilepsy and had sustained numer-
ous cardio-respiratory arrests; he was fed by nasogastric tube and
was requiring increasing amounts of supplementary oxygen. The two
hospital Trusts dealing with him sought a declaration that it would be
lawful not to provide further aggressive treatment in the artificial ventila-
tion and cardiac massage should the need recur but this was strongly

165
In setting out the intellectual process (ibid., at [34]) by which the doctor reaches his or
her decision, Hedley J is, in my respectful submission, confusing conscience (which is
primarily of a spiritual dimension) with intuition (which is founded on experience). He
does, however, agree that conscience is not a wholly rational sense and that it, too, has a
truly individual aspect (at [35]).
166
There are overtones here of Sir Stephen Brown P in Re C (a baby) [1996] 2 FLR 43,
(1996) 32 BMLR 44 and his insistence on dealing with the particularity of these cases
within the existing law.
167
n. 162 above, at [42]. See now Re Wyatt [2006] EWHC 319, [2006] 2 FLR 111.
168
Re L (medical treatment: benefit) [2005] 1 FLR 491, first reported as Re Winston-Jones
(a child) (medical treatment: parent’s consent) [2004] All ER (D) 313.
282 The troubled pregnancy

opposed by L’s mother who considered that they had established a strong
bonding relationship; moreover, she maintained he had defied the odds
by remaining alive and that the best of his life lay before him.
In a relatively short judgment, Butler-Sloss P relied on the well-
known words of Lord Donaldson in Re J – which have been recorded
at p. 269 – and supported Hedley J in Wyatt in applying a best interests
test while, at the same time, relegating the concept of intolerability to no
more than one aspect of those interests. In summary, there was a strong
presumption in favour of preserving life, but not where treatment would
be futile, and there is no obligation on the medical profession to give
treatment which would be futile.169 In the end, Dame Elizabeth granted
the declaration in respect of mechanical ventilation but not as to cardiac
massage and her reasons for so doing are instructive. As to the former,
there were serious risks associated with giving the general anaesthetic
which would be required for the insertion of the endotracheal tube; in
addition, the child had a 75–100 per cent chance of becoming ventilator
dependent:
The consequences of remaining permanently on an artificial ventilator would . . .
be to deprive him, as I understand it, of any closeness with his mother . . . and she
has said herself it would not be for him a life of sufficient value.170
Which seems to me to be a very good a example of the so-called ‘broad
interpretation’ of best interests that was pioneered by Butler-Sloss P and
Thorpe LJ.171
As to cardiac massage, the President pointed out that it had already
twice been used successfully on the patient. Despite the fact that almost
all the experts opposed its further use, she considered it should remain
an option for use depending on the clinical judgment of the treating
doctors – and a strong message was given to the effect that they should
think long and hard before rejecting that option.172 Dame Elizabeth
was so emphatic on this point as to draw attention to her basic reason
for distinguishing the two procedures in this way. It is clear that this
lies in the inherent dangers of mechanical ventilation and, looking back
over the various cases, it is apparent that the ‘danger’ of an aggressive


169
Re L n. 168 above, at [12]. The President does not define futility (see p. 246 above for
discussion). It could be, in the present case, because there was no curative treatment – a
purely medical assessment. The impression gained, however, is that her reasons were
wider and based on treatment serving no useful purpose in a more general sense.
Certainly, as explained, much of her final analysis rested on the actual damage that
aggressive treatment could cause.
170
ibid., at [23]. And at [25]: ‘that would not make his life worth living’.
171
See p. 249 above. 172 n. 168 above, at [30].
Management of the disabled neonate 283

treatment is a frequent reason for its omission being declared lawful. At
first glance, it seems illogical to use its dangerousness as a reason for
excluding a treatment without which the patient will certainly die – and
this paradox has never, to my knowledge, been addressed by the judges
concerned. It may, in fact, provide something of a safety net for the
medical profession. A death due to aggressive therapy is likely to attract
adverse publicity, a coroner’s inquiry and even, in these litigious days, to
litigation. While such factors should not affect, let alone determine,
treatment decisions, they can rightly be included in Butler-Sloss’s bal-
ance of advantages and disadvantages when other factors serve to render
a procedure futile.
Be that as it may, Re L takes us from the maelstrom of Wyatt into
calmer waters173 and, in following the reasoning of Lord Donaldson so
closely, restores the status quo as first established in Re J. But, even a
cursory look at the cases decided subsequent to that landmark decision
is sufficient to draw attention to the undoubted fact that, given a con-
flict between doctors and parents as to the management of disabled
children, the courts have almost invariably sided with the experts – the
case of Re T174 standing out as a glaring exception. In a way, this is
bound to be so. Most judges have been parents – they can agree or
disagree with other parents on the basis of experience; it is far harder –
although it can, of course, be quite properly done – effectively, to say to
a consultant paediatrician: ‘I know more medicine than you do’, parti-
cularly when, as is so often the case, the medical opinion is unani-
mous.175 This is not in any way to decry the dedication and intensity
of effort shown by the Family Courts – it is simply to state the obvious:
that, when a decision is going to be based on expert opinion, the experts
have a head start on the laypersons, just as the experts who have been
managing a case have the edge on those who are called in to give an
opinion. The reader, and, it has to be said, the author, may suspect that
the recent cases presage a change in attitude that is more than subtle.
There is a strong indication that what were once regarded as purely
medical matters are now being decided on a far wider base. With this in
mind, what will be the last case to be discussed within this series may
acquire a special interest.


173
Though, perhaps, fortuitously. Baby L died shortly after the case was heard and, despite
Butler-Sloss P’s exhortations to reduce the level of conflict, his mother took the matter
to the police: (2004) The Times, 13 November, p. 11.
174
n. 92 above.
175
It is clearly for this reason that the family courts have rejected a purely medicalised Bolam
test as a benchmark and have moved to the concept of widely based ‘best interests’.
284 The troubled pregnancy

The case of Baby MB. An NHS Trust v. MB176 concerned an
18-month-old child, MB, who had suffered from the age of six weeks
from spinal muscular atrophy. The condition, which is genetically deter-
mined and is untreatable, had progressed steadily until, at the time of the
hearing, he could move only his eyebrows, the corner of his mouth, his
thumb and his toes. A gastrostomy tube was in position and he could
breathe only by way of positive pressure ventilation through an endotra-
cheal tube. The prognosis was that he would deteriorate and the opinion
of his doctors was that it was unethical, even cruel, to keep him alive.
Accordingly, and notwithstanding the parents’ opposition, the Trust
sought a declaration that it would be lawful to withdraw all forms of
ventilation from M and, in general, only to palliate him and allow him
to die peacefully.177 On the other hand, the court was dealing with a child
who was described as having awareness and to have ‘the normal thoughts
and thought processes of a small child of 18 months’.178 Holman J’s
dilemma could, therefore, be summed up:
So far as I am aware, no courts has yet been asked to approve that, against the will
of the child’s parents, life support may be withdrawn or discontinued, with the
predictable, inevitable and immediate death of a conscious child with sensory
awareness and assumed normal cognition and no reliable evidence of any signifi-
cant brain damage179

– and my researches, together with the cases discussed in this book,
indicate that this is true, subject to the synchrony of the important phrases:
‘against the will of the parents’ and ‘a child with sensory awareness’.180 At
least, however, MB’s case was unusual in that the great majority of previous
cases dealt with the withholding of invasive treatment in the event that it
was needed. The judge was, therefore, faced with a problem which we have
not had occasion to consider thus far – is there any distinction to be made
between withholding and withdrawing treatment?
The question has, of course, both legal and ethical dimensions and
the answer depends very much on whether removal from ventilator
support is to be regarded as an act or an omission. It is now widely

176
An NHS Trust v. MB (a child represented by CAFCASS as guardian ad litem) [2006] 2
FLR 319.
177
In direct contrast, the parents issued a cross application making it lawful to perform a
tracheostomy by means of which to carry our long-term ventilation.
178
n. 176 above, at [10]. 179 ibid., at [11].
180
Holman J, himself, drew attention to what one would see as the two most likely
contenders to precedence: Re C (a baby), n. 116 above (sustained entirely by artificial
ventilation but severely brain damaged and parental agreement to removal), and Re C
(a minor) (1997), n. 86 above (the only disagreement with the parents related to
re-establishing ventilation after an attempt to wean the child off the support).
Management of the disabled neonate 285

agreed that there is no logical ethical distinction to be drawn between
the two so long as the objective is the same in either case. Most would,
however, agree that to say there is no moral difference is not to say there
is a moral equivalence; there are, indeed good consequentialist argu-
ments in favour of retaining an ethical distinction between killing by act
and killing by inactivity.181
By contrast to what is a somewhat pedantic argument, such a distinc-
tion is critical to the criminal law – actively causing death can scarcely
avoid an implication of unlawful homicide whereas causing death by
omission will be regarded as such only in well-defined circumstances.182
The issue in respect of withdrawal of treatment has been examined in
detail in Airedale NHS Trust v. Bland183 from which Holman J also drew
inspiration. The House of Lords in that case which, as is well known,
concerned the management of a 21-year–old man in a permanent vege-
tative state, concluded that removal of life support was an omission – this
being, in general, on the rather unsatisfactory grounds that, were it to be
held otherwise, it would be impossible to accept the equivalence of with-
holding and withdrawing treatment.184 It was this second essential that
was to concern the court in MB most crucially and Holman J again turned
to Bland and, in particular, Lord Lowry who said in that case:
I do not believe that there is a valid distinction between the omission to treat a
patient and the abandonment of treatment which has been commenced, since to
recognise such a distinction could quite illogically confer on a doctor who had
refrained from treatment an immunity which did not benefit a doctor who
had embarked on treatment in order to see whether it might help the patient
and had abandoned the treatment when it was seen not to do so.185



181
There is a mass of literature on the subject. A concise appreciation is to be found in
Gillon, n. 16 above. For the present author, perhaps the main distinction to be made is
that the latter does not necessarily lead to the former.
182
In particular, when the relationship is such that the ‘omitter’ has a duty to act. The
doctor may be exonerated by way of a rather circular application of the Bolam principle –
that he has no duty to act if a responsible body of medical opinion would have failed to
act on grounds of futility – Airedale NHS Trust v. Bland, n. 183 below per Lord Keith at
AC 858–9 BMLR 106–7.
183
[1993] AC 789, (1993) 12 BMLR 64.
184
ibid., per Lord Goff at AC 866, BMLR 113. I have to say that I find the idea of regarding
the dismantling of ventilator support as ‘inactivity’ to be sophistic: see J. K. Mason and
G. T. Laurie, Mason and McCall Smith’s Law and Medical Ethics (Oxford, Oxford
University Press, 7th edn 2005) at para. 17.104. Nonetheless, the inner pragmatist
must be grateful to the House of Lords for grasping the nettle. It is true that Bland dealt
with the removal of a nasogastric tube; the step between that and removal of a venti-
lator is, however, not great – see Lord Browne-Wilkinson (n. 183 above, at AC 882, at
BMLR 128).
185
ibid., at AC 875, BMLR 121.
286 The troubled pregnancy

Once again, the circularity of the argument is unsatisfactory but, perhaps,
inevitable. It was, however, the unanimous view of the House. The judge
was also able to draw on the medical profession for ethical support:
There is no significant ethical difference between withdrawing (stopping) and
withholding treatments, given the same ethical objective186

– ‘the best interests test’, Holman J concluded, ‘applies equally to both
situations’.
Having, thus, dealt with the relatively novel aspects of the case, Holman J
considered that the law in this area was now well-established and could be
encompassed within ten propositions.187 All of these have been considered
in the course of this chapter. Nevertheless, MB, being the last case in the
series, can conveniently provide a summary of all that has gone before.
Accordingly, despite the element of repetition, I think it will be useful to
recapitulate Holman J’s ten propositions in full. They are:188
i) When asked by one or both parties to arbitrate on a treatment
decision, it is the role and duty of the court to do so and to exercise
its own independent and objective judgment;
ii) This right and power only arises because the patient lacks the
capacity to make a personal decision;
iii) Substituted judgment has no place in decision making, nor does the
court decide on the reasonableness of the doctors’ or parents’
decisions;
iv) The matter must be decided on the basis of an objective approach or
test;
v) That test is the best interests of the patient – best interests being used
in the widest sense;
vi) The court must do its best to balance all the conflicting consider-
ations in a particular case and see where the final balance of the best
interests lies;
vii) Considerable weight must be attached to the prolongation of life but
the principle is not absolute and may be outweighed if the pleasures
and the quality of life are sufficiently small and the pain and suffering
or other burdens of living are sufficiently great;
viii) The principal authority for these considerations lies in the words of
Lord Donaldson in Re J (a minor) (wardship: medical treatment);189


186
Royal College of Paediatrics and Child Health, Withholding or Withdrawing Life Sustaining
Treatment in Children: A Framework for Practice (2nd edn 2004) at para. 2.3.2.1.
187
n. 176 above, at [16].
188
The wording is my own summarised interpretation of the original.
189
n. 8 above, at Fam 46.
Management of the disabled neonate 287

ix) All these cases are very fact specific;
x) The views and opinions of both the doctors and the parents must be
carefully considered. The parents wishes, however, are wholly irrel-
evant to consideration of the objective best interests of the child save
to the extent that they may illuminate the quality and value to the
child of the child/parent relationship.
As to the last of these propositions, the judge was confronted with ‘a very
formidable body of medical evidence of very high quality’ which was
unanimous that, if only M’s interests were being considered, then with-
drawing ventilation and allowing him to die would be in his best inter-
ests,190 this being, largely on the dual grounds that his condition was
deteriorating and that the medical procedures to which he was exposed
caused a mixture of discomfort, distress and pain. The medical evidence
was, in fact, that of an appalling condition. M’s mother, on the other
hand, while admitting that he showed evidence of pain and distress,
pointed out that he also showed evidence of pleasure from visual and
aural stimuli; both she and her husband thought the experts were unduly
pessimistic.
Accordingly, Holman J turned to the lists of benefits and burdens
introduced by Thorpe LJ in Re A191 – and advocated by the Court of
Appeal in Wyatt as being the best and safest way of balancing all the
factors involved in the assessment of best interests – and reproduced such
a list in his judgment.192 Again, this is a novel aspect of MB which merits
brief discussion. It is notable that Holman J clearly appreciated that,
useful as they might be, such lists should be used with care. In particular,
he identified ‘the huge difficulties’ in formulating:
[a]n overall appraisal of the weight to be attached to so many varied consider-
ations which cannot be weighed ‘mathematically’, and so arrive at the final
balance and decision193
– and it is precisely that ‘mathematical’ concept which, in my view,
renders such ‘profit and loss’ balance sheets less ideal than might seem
at first glance. The guardian’s list of benefits derived from continuing
ventilation occupies 7½ inches of A4 paper; the comparable list of
disbenefits runs to 46½ inches. While it is very unlikely that anyone
would, in practice, be deluded into interpreting a qualitative analysis in
quantitative terms, the temptation to believe that the disbenefits are,

190
n. 176 above, at [30]. 191 n. 161 above.
192
n. 176 above, at [60]. The list was, in fact, one prepared on behalf of the guardian by
Ms Caroline Thomas, counsel for the child. As far as I know, it is the first, and excellent,
example of compliance with Re A (n. 161 above) to be reported.
193
n. 176 above, at [62].
288 The troubled pregnancy

accordingly, some six times greater than the benefits is strong.194 Holman J
considered (at [58]) that such balance sheets should be drawn up by both
parties in any future case of this nature; that may well be appropriate, but
only if their use is confined to what they are – aide-memoires.
Be all that as it may, Holman J concluded that it was not in the best
interests of M that ventilation should be discontinued with the result that
he die immediately and he refused the declaration sought by the Trust.
In fact, he went further in considering that it was positively in M’s best
interests to continue with continuous pressure ventilation – including
persistence with the very invasive nursing it involved.195 Nonetheless,
he was prepared to declare that it would be lawful to withhold certain
painful procedures – including cardio-pulmonary resuscitation and its
adjuncts and the prescription of parenteral antibiotics – in the event that
the need arose, the reason being that the fact of the need would indicate
that M was moving closer to death despite being ventilated.
So what was it that induced Holman J to turn so dramatically against
not only the general tide of decisions in this area but also against what
was unanimous medical opinion – something which we have seen to be
very rare indeed? He gave his reasons in a fairly lengthy passage196 which
I hope to summarise without destroying its particular immanence:
I accept that there is almost relentless discomfort . . . It is indeed a helpless and sad
life. But that life does in my view include within it the benefits that I have tried to
describe . . . [I] must proceed on the basis that M has age appropriate cognition,
and does continue to have a relationship of value to him with his family, and does
continue to gain other pleasures from touch, sight and sound . . . [These benefits]
are precious and real and they are the benefits, and only benefits, that M was
designed to gain from his life. I do not consider that from one day to the next all
the routine discomfort, distress and pain [that he suffers] outweigh these benefits
so that . . . life itself should immediately end. On the contrary, I positively consider
that as his life does still have benefits, and is his life, it should be enabled to
continue . . .
The time may come when he has further deteriorated to such an extent . . . that
the balance changes. But I do not consider that the future, however awful it may
become, yet justifies that today, tomorrow or the next day his current burdens
outweigh the benefits and he should be allowed to die.
The doctors all consider that there is a positive benefit to M [being enabled
to die what is] called a ‘good death’ . . . Some people . . . might strongly desire to


194
In point of fact, the guardian supported the Trust.
195
ibid., at [90]. Although adding the all-important proviso: ‘Although that is my opinion, I
cannot and do not make an order or declaration to that effect. I merely state it.’ Holman J
was not, therefore, dictating medical treatment – indeed, as he implied, the long line of
precedents, forbade him to do so.
196
ibid., at [100]–[105].
Management of the disabled neonate 289

achieve a good death even at the expense of a shorter life. But not all. The instinct
to survive is so strong that others may endure great and prolonged suffering in the
struggle to survive . . . I do not think that on the facts of this case the perceived
advantage of a good death can yet tip the scales so that the benefits of survival and
life itself are outweighed.
It is difficult to criticise such a compassionate decision and many would
say that it is presumptuous to do so. Nonetheless, perhaps because of my
medical training, the evidence on behalf of the Trust seems so over-
whelming as to make the decision seem not so much as a balancing act
as a search for straws on which to hang the ethics of the sanctity of life.
Despite Holman J’s insistence that his judgment was not designed to have
‘implications’,197 one has to look for the basic reason behind it and its
effect, if any, on the existing jurisprudence. In a nutshell, is there
a distinction to be drawn between the contemporaneous case of baby
L – for which see p. 281 above – and M, both of whom were equally loved
by their mothers?
The significant factor lies in Holman J’s concentration on M’s cogni-
tive ability which, as we have seen, he did not doubt was that of a normal
18-month-old child. MB, therefore, effectively presented the same
extreme ethico-legal problems as those that have been met in the several
well-known cases of progressive neuro-muscular disease in adults and
which form a distinctive category of cases within the euthanasia
debate.198 The great majority of apposite infantile cases which we
have discussed have been severely brain damaged; I read Holman J as
placing MB in the far more difficult category of mens sana in corpore
insano. To that extent, he was not moving against the emerging stream
but was considering a rare, if not unique, set of circumstances.
Accordingly, An NHS Trust v. MB may, indeed, have significant impli-
cations – not the least of which lies in the overhanging question: was it
the right decision? It is feasible to suggest that, in contrast to brain
damaged children – who we can hope do not appreciate or feel their
status – it is unkinder to subject the sensate child to ‘relentless discom-
fort’ by preserving its life. It is, however, difficult to see the alternative as
other than a step towards child euthanasia which we will consider as a
finale to this book. Holman J’s decision will be tested to the limit should
there be another MB. (See Addendum to this Chapter.)


197
ibid., at [107].
198
The case of Pretty v. United Kingdom [2002] 2 FLR 45 will probably spring first to the
mind of the UK reader but perhaps the more relevant is the New Zealand case Auckland
Area Health Board v. Attorney-General [1993] 1 NZLR 235, [1993] 4 Med LR 239
because it concerned an incompetent adult – in that case, the decision went the other way.
290 The troubled pregnancy

Professional guidelines
The courts of the United Kingdom are, as we have seen, traditionally
reluctant to interfere with clinical judgment – a departure from the norm
is likely to result in a cause celebre. Equally, of course, professional bodies
´`
can only advise their members as to what constitutes good professional
practice or, in our particular ambience, what is to be regarded as an
adequate standard of care. The route commonly adopted in the United
Kingdom when the common or statute law is unclear as to detail is by way
of the creation of ‘guidelines’ by an authoritative body. These generally
do not have the force of law but their non-observance will reflect
adversely on the person who fails to follow them – and this is particularly
so when the guidelines take the form of a Code of Practice issued by a
body that is itself created by statute or by secondary legislation.199 The
situation is less clear, however, when there is no statutory backing and
when guidelines remain just that. Kennedy and Grubb, while agreeing
that the courts, when ‘wrestling with legal/moral issues arising from
clinical practice, should be able to refer to a professional view’, have, in
fact suggested that ‘unofficial’ guidelines may be controversial within the
profession and, consequently, may attract an undeserved significance.200
Of the several documents relating to paediatric practice that are now
available,201 those of significance in the present context clearly include
that produced by the Royal College of Paediatrics and Child Health,202


199
A classic example is the establishment of the Human Fertilisation and Embryology
Authority by way of the Human Fertilisation and Embryology Act 1990, s.5 and its
proposed merger with the Human Tissue Authority to form the Regulatory Authority
for Fertilisation and Tissue. Guidelines issued by the General Medical Council, which is
bound to provide advice under the Medical Act 1983, would have similar authority and
are subject to judicial review: ‘Having produced the Guidance, the task of the GMC . . .
is to ensure that it is vigorously promulgated, taught, understood and implemented at
every level and in every hospital’ – R (on the application of Burke) v. General Medical
Council (2005) 85 BMLR 1, CA at [83].
200
Kennedy and Grubb, Medical Law (3rd edn 2000), pp. 2175–6. J. H. Tingle, ‘Do
Guidelines Have Legal Implications?’ (2002) 86 Archives of Disease in Childhood 387–8
believes that professional autonomy will always set the legal standard and that guidelines
cannot be seen as a shield.
201
For example, British Medical Association, Withholding and Withdrawing Life-prolonging
Medical Treatment (2001) and General Medical Council, Withholding and Withdrawing
Life-prolonging Treatments: Good Practice in Decision-making (2002). See also BMA
Parental Responsibility (2004). The Report of the Nuffield Council on Bioethics,
Critical Care Decisions in Fetal and Neonatal Medicine: Ethical Issues (2006), was issued
during the last phase of the publication of this book. It seems to do little more than
reiterate current medical practice though it is unambiguous in its recommendations
202
Royal College of Paediatrics and Child Health, Withholding or Withdrawing Life Sustaining
Treatment in Children: A Framework for Practice (2nd edn 2004).
Management of the disabled neonate 291

the first edition of which was quoted with approval in Re C (a minor).203
Whether or not these guidelines represent a consensus,204 they are the
most definitive available and they merit recording. In its summary, the
Royal College suggests there are five conditions in which consideration
might be given to withholding or withdrawing treatment:
* The ‘brain dead’ child. Once the diagnosis of brain death has been made,

it is agreed within the profession that treatment in such circumstances
is futile and withdrawal is appropriate.205
* The ‘permanent vegetative’ state. In this situation it may be appropriate

to withdraw or withhold life sustaining treatment.206
* The ‘no chance’ situation. The child has such severe disease that life

sustaining treatment simply delays death without significant alleviation
of suffering. Treatment to sustain life is inappropriate.207
* The ‘no purpose’ situation. Although the patient may be able to survive

with treatment, the degree of physical or mental impairment will be so
great that it is unreasonable to expect him or her to bear it. The child in
this situation may not be capable now or in the future of taking part in
decision making or other self directed activity. If it is likely that future
life will be ‘impossibly poor’ then treatment might reasonably be with-
held or withdrawn.
* The ‘unbearable’ situation. The child and/or family feel that in the face of

progressive and irreversible illness further treatment is more than can
be borne. They may wish to have a particular treatment withdrawn or
to refuse further treatment irrespective of the medical opinion that it
may be of some benefit.208

203
n. 86 above.
204
And it is fair to note that the College itself recognises that this may not be so at para. 1.
205
I regard this as tautologous. A brain dead child is dead and there is no ethical or legal
justification for continuing to treat a dead child: Re A [1992] 3 Med LR 303. The
College recognises this in the body of the report at para. 3.1.3.
206
It is to be noted that the rule under which virtually all cases in which it is proposed to
withdraw artificial nutrition and hydration should be referred to the High Court applies
only to adults who lack capacity; the extensive nature of parental responsibilities is
thereby endorsed: Practice Note (Official Solicitor: declaratory proceedings: medical and
welfare decisions for adults who lack capacity) [2001]2 FLR 158.
207
It is said that the knowing continuance of futile treatment may constitute an assault or
‘inhuman and degrading treatment’ under Article 3 of the European Convention on
Human Rights at para. 3.1.3. This, I suggest, would be, at least, very difficult to show –
one person’s futility may be another’s heroic effort. See, for example, Simms v. Simms,
A v. A [2003] 1 All ER 669, (2003) 71 BMLR 61 – although, in this case, the judge made
it a condition of her judgment that treatment involved no risk of increasing the patients’
suffering.
208
This last category sits uneasily in a discussion that is founded upon cooperation between
the hospital and the parents. The final situation postulated seems to cry out for a court
decision given that the medical opinion was firmly held. Cf. the case of Glass v. UK
292 The troubled pregnancy

In situations that do not fit these five categories, or where there is uncer-
tainty about the degree of future impairment or disagreement, the child’s
life should be safeguarded in the best way possible until the issues are
resolved.
One could spend a great deal of time discussing these guidelines. For
present purposes, however, there are three aspects which merit consi-
deration in the light of the foregoing discussion. First, it is clear that the
profession, as represented by the College’s Ethics Advisory Committee,
has abandoned any reliance on the ‘sanctity of life’ principle and relies
on a quality of life analysis. This is confirmed by the British Medical
Association which recommends209 that intervention may be unjustified
if the child’s condition is incompatible with survival or where there
is broad consensus that the condition is so severe that treatment would
not provide a benefit in terms of being able to restore or maintain
the patient’s health. Moreover, where treatments would involve suffer-
ing or distress to the child, these and other burdens must be weighed
against the anticipated benefit, even if life cannot be prolonged without
treatment.
Second, the recommendations are, perhaps inevitably, based on a
medical assessment – the child’s ‘best interests’ receive very little atten-
tion. While ‘best interests’ will certainly lie at the heart of any medical
recommendations,210 the lacuna tends to strengthen the Court of
Appeal’s repeated insistence that the latter represent only a part of the
evidence to be used in the determination of the former.211 Finally, it is
noteworthy that neonatal euthanasia – defined by the College as ‘causing
death by intended lethal action, but for the relief of suffering’ – is not
listed as a recognized treatment option.212 That is not, however, to say

(2004) 77 BMLR 120 in which the United Kingdom was found in breach of Article 8 of
the Convention for having delayed a court hearing in a case of disputed therapy.
209
n. 201 above.
210
The Foreword to the first edition emphasises the fundamental aim ‘to consider and
serve the best interests of the child’. This is repeated in the second edition at para. 1.
211
The BMA, for example, adds: ‘Where there is genuine uncertainty about which treat-
ment option would be of most clinical benefit, parents are usually best placed and
equipped to weigh the evidence and apply it to their child’s own circumstances’ –
n. 201 above at para. 15.1. For an empirical study of how decisions are made in the
hospital setting, see Hazel E. McHaffie, Ian A. Laing, Michael Parker and John
McMillan ‘Deciding for Imperilled Newborns: Medical Authority or Parental
Autonomy?’ (2001) 27 Journal of Medical Ethics 104–9.
212
Para. 2.4.3. The Guidelines make it clear that the College does not support euthanasia
as defined. A recent press report suggests that this may not now be so: Sarah-Kate
Templeton, ‘Doctors: Let Us Kill Disabled Babies’ (2006) Sunday Times, 5 November,
p. 1. The wording of the College’s statement, however, makes it difficult to justify the
emotive newspaper heading; it is only suggested that the problem should be considered
in depth.
Management of the disabled neonate 293

that that will always be the case nor that there are not, even now,
supporters of active euthanasia for selected categories of disabled new-
borns. We will make this our last port of call.


Neonatal euthanasia
We have already looked, briefly, at the proposition that controlled neo-
naticide could be seen as a preferable alternative to late abortion in the
case of severe fetal disability and have discarded it.213 Yet the matter
cannot be left there. We are concerned, now, with children who have been
born into a life which, on occasion, may be intolerable in the true sense of
the word and, if it is arguable – as it is widely argued214 – that an adult in
such a condition has a right to have his or her life ended, then it is also
arguable that the neonate has a similar right. The difference between the
two cases is, of course, that, whereas the former is contingent upon a
considered decision by an autonomous individual with the capacity to
make such a decision, no such exculpation is available to the infant.
A surrogate decision, based on either a fictional substituted judgment
or made in the child’s best interests, would have to be taken in the latter
case – and the legal and moral difficulties in equating death with best
interests are so great that the conditions justifying such a conclusion
would have to be quite exceptional.
If there were to be a genuine movement towards neonatal euthanasia,
one would expect it to arise in a jurisdiction that has already accepted it in
the adult ambience and such an initiative has, in fact, recently been taken
in the Netherlands by way of the so-called Groningen Protocol.215 This,
coming from a single University Department of Paediatrics, has now been
endorsed on a national scale by Dutch doctors and has been accepted as
representing good medical practice by the government.216 In simple
terms, the Groningen Protocol, first, divides those children for whom
‘end-of-life decisions’ might be made into three categories: those with no
chance of survival, those who have a very poor prognosis and are depen-
dant on intensive care and, finally, those with a hopeless prognosis who are


213
See p. 242 above.
214
Clearly, this is no place to attempt to revisit the euthanasia debate. Of the mass of
available literature, there can be few works more helpful than Margaret Otlowski,
Voluntary Euthanasia and the Common Law (Oxford: Oxford University Press, 2000).
215
Eduard Verhagen and Pieter J. J. Sauer, ‘The Groningen Protocol – Euthanasia in
Severely Ill Newborns’ (2005) 352 New England Journal of Medicine 959–62.
216
Tony Sheldon, ‘The Netherlands Regulates Ending the Lives of Severely Ill Neonates’
(2005) 331 British Medical Journal 1357.
294 The troubled pregnancy

experiencing what parents and medical experts deem to be unbearable
suffering. The Protocol is concerned with this last group and presupposes
that five medical requirements must be fulfilled before the life of such an
infant can be deliberately terminated:
217
* The diagnosis and prognosis must be certain;

* Hopeless and unbearable suffering must be present;
* The diagnosis, prognosis and unbearable suffering must be confirmed

by at least one independent doctor;
* Both parents must give informed consent; and

* The procedure must be performed in accordance with the accepted

medical standard.
And a number of practical and supportive conditions which will help to
clarify the decision-making process are listed.
Neonatal euthanasia is still not legal in the Netherlands but is governed
by the rather unusual medical jurisprudence adopted in the Low
Countries218 whereby a decision to prosecute in the case of an unnatural
death depends on whether or not the requirements of accepted medical
practice have been met – which, on the face of things, looks rather like the
application of a super-Bolam test.219 This post hoc process contrasts
vividly with the United Kingdom policy whereby, as we have seen, the
courts will be asked for a declaration as to the lawfulness of a medical
action before the event. Which makes one wonder, in passing, whether the
Groningen Protocol has done much more than raise a storm in a teacup.
Verhagen and Sauer220 reported that 22 cases of euthanasia involving
infants with spina bifida had been reported to the public prosecution
service since 1997; it was held in all that the requirements of ‘careful
practice’ were fulfilled and no prosecutions followed. The Protocol may
well be attempting to do not more than tidy up an uncertain law which is
already being widely flouted.221



217
Whether or not a prognosis can ever be certain is open to question; in my view it is a
matter of the degree of probability which can only achieve near certainty. See also
T. K. Koogler, B. S. Wilfond and L. F. Ross, ‘Lethal Language, Lethal Decisions’
(2003) 33 Hastings Center Report 37–41.
218
History suggests that, where the Netherlands has trod, Belgium will follow – see Luc
Deliens, Freddy Mortier, Johan Bilsen et al. ‘End of Life Decisions in Medical Practice
in Flanders, Belgium: A nationwide Survey’ (2000) 356 Lancet 1806–11. Also, a note by
Jane Burgermeister, ‘Doctor Reignites Euthanasia Row in Belgium after Mercy Killing’
(2006) 332 British Medical Journal 382.
219
See p. 10 above. It seems that the assessment will be made by a committee of three
doctors and an ethicist (n. 217 above).

<<

ńňđ. 11
(âńĺăî 12)

ŃÎÄĹĐĆŔÍČĹ

>>